Monday, October 31, 2011

Behind the scenes of EB.

I can't believe EB Awareness Week is over already.  I sure dropped the ball this week, but NOT YOU GUYS!  You have all been so amazing in helping us spread the word about EB.  I hope that it doesn't end here and that you will all still continue to be advocates for Tripp and for all the people living with EB.  

 I haven't blogged about what's been going on with Tripp because it's been kind of rough around here, but I promise I will soon.  He had a really tough week in the beginning, but the past 2 days have been a little better.  But in honor of EB Awareness Week, I want to this post to focus on people who have helped us and other families through this difficult journey.

I want to take the time to recognize these people/foundations that sometimes go "unnoticed" in the EB world.  These are 3 women who are very dear to my heart- and I've only had the honor of meeting one of them, but one day I will meet the other two... I am positive.   These women may often get caught behind the scene, but without them... many EB families would not receive the support and care that they need and deserve.  These are people that deserve recognition for their hard work and dedication to the EB community.  

Mrs. Laurie Sterner and 
The Butterfly Fund:


Laurie Sterner~Founder, Executive Director
Allie Sterner~President
Michael Sterner~Vice President, Secretary

Board Members~ Steve Thrasher, Jim Fewell, Liana Fewell, Jannette Braa, Karen Battaglia, Claire Murray         
    


The Butterfly Fund is dedicated to helping EB families and now also families who have a child diagnosed with any serious life altering disease.
 100% of the proceeds of their events & donations go directly to family assistance in the form of financial aid,  food, housing, clothing & care.
Absolutely NO salaries are paid.
They are not federally funded or grant funded, so the amount of funds relies solely on donations from kind businesses and individuals. 
The Butterfly Fund does not discriminate.  Anyone and everyone who has a child with a serious illness may inquire with them. 



100% of the money they raise at their Annual event- The Butterfly Ball, gets allocated to as many families as there is money.  
They give every bit of the profit away.

This fund has reached out to us and is still reaching out to us on MANY occasions.  
Here are some examples of the services they have done:

-They provide Kicky Pants clothing for many families with EB (they've given Tripp MANY of his shirts- which are VERY expensive and SUPER awesome!)
-For 4 years, they have been paying a large share of the rent & living expenses for a local young man who has EB and they hold a special annual event just for him…sometimes more than once.
-They have bought much needed baby items for a family who's baby was born with MS
-Have given gift cards to a family whose baby was born with CP
-Sponsored a companion dog for a young girl with EB
-They bought a car and other items for a young single Mother whose son has EB
-Have given funds to approximately 15 families, with an array of catastrophic illnesses.
-They sponsored Aubrey’s 5K and Tim Ringgold’s various events and fundraisers
-They sponsored a young boy in Sonoma who was in a serious car accident/volunteered at his event
-Helped purchase bandages for Raul, who has EB and was living in an orphanage
-They sponsored a young man who is paralyzed and has brain damage
-They've helped a family financially who had a young boy with a brain infection
-They've donated Art supplies to Camp Wonder
-They honor 2 families every year at their annual Butterfly Ball – tell their story and if need be, help them financially.  These are families who have or had a child with a catastrophic illness or event.  

*1st Annual Butterfly Ball*
Cody Cordellos- a young man who has no family support live a better life.
The Shiery Family- 5 year old daughter, Rachel died from Brain Cancer

*2nd Annual Butterfly Ball*
The Spaulding Family: honored Garrett who has EB
Anim Vinson Family- Honored Her son William who has EB

*And this years honorees* 
The Pop Family who lost their daughter Elle last year to EB
And The Kragler Family whose newborn daughter's delivery at birth caused lack of oxygen and she now has CP. She is 3 years old and cannot walk or talk.

-They attend other fundraisers for children and support them financially
-They have helped the Cannell Family in the adoption of their 2 boys by raising awareness and funds.
-They raise awareness for EB any chance they get, including having a booth at very well attended Art shows and events.
-Mrs. Laurie's daughter, Allie owns a retail children’s store and she is constantly having items for sale that raise awareness for The Butterfly Fund and EB at the same time.
-They buy Christmas presents for families who have children with catastrophic illnesses that otherwise could not afford them!

Please visit their website and see how this family of angels work so hard to help other families who are in need.  They don't get enough recognition for what they do.  
Thank you Mrs. Laurie, Allie, Mr. Michael, and all who work hard to make this fund possible.


Mrs. Leslie Radar

I will never in my lifetime forget Leslie Radar.  
She was the first mom (and really the first "EB experienced" person) that I spoke with after Tripp was born.  Her daughter, Lauren lost her battle with Junctional EB at just 7 months.  She was my support when I received the news that Tripp was diagnosed with "Junctional" EB.  
She was so helpful, so brave, so understanding, and such a great listener.  
She helped me to get started and get on my feet with everything that I needed to properly care for Tripp. 
She is another amazing person that I have yet to meet face to face.
After her sweet daughter Lauren received her angel wings, Leslie started the New Family Advocate Program with DebRA.  She joined the DebRA Board of Directors and she organized the Wound Care Clearing House in her own home (but it is now being run through DebRA office).  Then, she joined Hollister Wound Care as the Coordinator of EB affairs.  Hollister is very compassionate and supporting of the EB community. They are always striving to make wound care products that improve quality of life by having comfortable dressing that are virtually pain free to remove.  Leslie makes personal visits to the homes of families with new EB babies.  She continues to help EB families with all wound care product questions, insurance issues, and tips and suggestions on how to use products.  She informs families of EB friendly shoes and clothing, and assists new families to network with other EB families and social media sites.

Leslie likes to be "behind the scenes."  But I think she deserves a tremendous amount of recognition.  There is NO better support than a mom who has been through the exact situation that you are in.  Leslie has dedicated her life to helping other EB families.  Thank God for people like her who use their experiences to help and educate others. 
Thank you, Leslie.  You're my hero. 


Ms. Geri Kelly-Mancuso

Geri is the EB Nurse Educator for DebRA of America.  
Ms. Geri will forever hold a very special place in my heart.  She was there from day one (she talked to my dad a lot in the beginning when I was in "shock,") but then she and I communicated on a regular basis.  She sent us out care-packages right away when Tripp was born.  She was always available when we needed her and she actually came to our house for the new patient visit when Tripp was about a month old (Mrs. Leslie Radar wasn't able to at the time) and spent the day with us, talking and sharing information that we needed to know.  Geri is essential in the EB community.  She is very knowledgable about EB and will work hard in every way possible to help in whatever way she can.  Whether it be communicating with doctors/patients across the world or just lending an ear when you've had one of "those" days.  She is amazing and will be a friend of mine for the rest of my life.  

Thank you to EVERYONE who works "behind the scene" or not for our family and all the EB families.  I know I speak for all of us when I say that we truly appreciate what you guys do.  
We are blessed to have you ALL in our lives.  

Love,
Photobucket

154 comments:

  1. I know Allie and the Sterner gang! She has the store that sells clothes made for EB kids! Small world it is now.

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  2. As I take pictures of my baby in his first Halloween costume, I can't help but to think of sweet Tripp. I pray each day for his comfort but I'm sending up extra prayers for a miracle for him. You are amazing Courtney; thank you for sharing him and your journey with us!

    Love-
    Mary and Baby Jackson

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  3. Courtney, you are sweet. Thank you for your kind words. I will always be there for you and Tripp. I am still bummed that I couldn't make it to your house after Tripp was born. Gerri, knows I am secretly jealous that she got to go! We will definitely meet someday.

    Leslie Rader

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  4. I pray for Tripp every day, and everyone in my immediate family (and many in my extended family, too) now know about EB. I pray specifically that God will take Tripp's pain away so that he may experience life as "normally" as possible. I pray for you, Courtney, to have continued strength so that you can care for Tripp as you have been all along. Love to y'all from New Iberia, Louisiana!

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  5. Thanks for your post about these AMAZING women! Each has been a help to us as well. Leslie came and spent the day with us when Bella was just 3 weeks old. Geri has graciously answered our many questions via phone/email. Laurie generously donated some items for our Bella's Bash fundraiser in May.

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  6. Sounds like you have an amazing little boy and you seem like you are a strong lady. I'm praying for you, your little boy and your family. Stay strong!

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  7. I read your blog daily and I am happy to stop by and drop some love to you and your sweet boy!

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  8. Praying for you and your beautiful little boy. sending lots of love. Your son is a gift to this world.

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  9. You have done great things with so little, and your little boy lives a better life because of it. Know that you are in my thoughts, and that the universe knows how amazing you are for being so good to your little Tripp.

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  10. I'm thinking of Tripp and your family. I"m holding you all in my heart and wishing him days full of laughter and light. You are being thought of and strength is coming your way from portland oregon.
    xx

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  11. WOW! I cannot image what it must be like to have a child with EB. You are such a strong and amazing woman, and all of you who have children with EB. Thank you for making people aware of this, and I am praying for you and Tripp. What a precious little boy.

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  12. Thank you for sharing Tripp's story, Courtney! What a wonderful and loving mother you are.

    Are you familiar with the Unclutterer blog by Erin Doland? She also has EB, which she credits as the inspiration for her blog, her book, and why she lives life the way she does.

    I wish the best for you and your beautiful boy.

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  13. My heart goes out to you and your little boy! I'm praying for continued strength and hope for you, for healing for Tripp and for wisdom and skill for his doctors. Be blessed!

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  14. A dear little man given to his angels here on earth to make a difference in the lives that are touched. Thank you for sharing your story. You have more strength than you know. Much love Sallianne.

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  15. Courtney, You and these three women you highlight are going through so much and it is amazing to see the good you are fiercely making happen. I can tell Tripp has so much joy, and that can only be because of the great mom he has. Love, Emma

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  16. Courtney,
    just wanted you to know how amazing you are. I check your blog every day and pray for you twice as much as that. Thank you so much for sharing Tripp's story and smile.

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  17. You're changing lives, and enhancing the life for sweet Tripp! Will be sending prayers that Tripp's week gets better and that you can breathe for a moment. Thank you for bringing EB to our attention and for fighting so hard! Much love to you!

    jana
    bandbacktogether.com

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  18. What an amazing story you and little man Tripp have. I am sending you warm wishes and lots of prayers for your family. Hugs to Tripp!

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  19. Thinking of and praying for your family and your beautiful boy. Lots of love to you all x

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  20. What an amazing post about a lot of amazing people. I'm glad you have these resources for help and support. Tripp is a beautiful little boy and you have an amazing attitude. I know you'll continue to be strong for each other and I wish you and your family the best. You will be in my prayers.

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  21. Thank you so much for sharing your story. I had never hear of EB before, and you explain it in such a clear way. You are an amazing mom to an amazing little boy. Y'all are lucky to have each other.

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  22. Courtney,
    What a privilege to read your blog and learn about EB and Tripp. I am sending you encouragement and peace and love from Kentucky. May you hold John 14:27 close to your heart every second of the day - "My peace I give to you, not as the world gives do I give to you. Let not your heart be troubled. Neither let it be afraid." Hold tight to your love for your little boy, your amazing strength as a mom and your belief in a BIG God. I am saying a prayer for you.

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  23. I just read Tripp's story and looked at all his pictures . . . what a beautiful and happy little guy! I love the one where his head is back and he's laughing, he looks so jolly, like a little Santa, haha...

    Much love for you and your baby. Thank you so much for sharing his life with us.

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  24. Courtney, what a good mommy you are! I had no idea what EB was before Love Bomb sent me to your blog. thank you for helping educate the world about this horrible condition. May we find a cure for EB soon so Tripp and all the other precious babies don't have to suffer from this horrible condition. Bless you and your sweet little Tripp.

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  25. He is such a beautiful bouncing boy! His smile and the love that out pours from his eyes are inspiring, and uplifting. How can this little boy who knows a pain that I can't even conceive, make me feel so full! He is amazing, And I am sure he got all that from you. You two share that same smile, and that same outpouring of love. Heavenly Father knows you, as you and Tripp are his son and daughter. You'll be a family for time and all eternity! Remember Heavenly Father knows what his children can handle and even though he is going through this and it seems to be unfathomable, Tripp is a strong Son of God, and he can make it through. I love you and Tripp. I'll have his perfectly round face and dimples in my heart, mind and prayers.

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  26. Just reading about the disease has me shaken up. Tripp seems to be a beautiful child, and he is lucky to have a mother like you who is so intelligent, so loving and so beautiful. Lots of love going out to you and Tripp.

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  27. Tripp is such a sweet little boy, and you are an amazing mom, not just because of all you do for Tripp but for babies and children with EB. You all will be in my thoughts and prayers!

    Paula - www.bandbacktogether.com

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  28. You are both so amazingly strong and beautiful.

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  29. Thank you for sharing your beautiful son with is. Much love and hugs!

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  30. Courtney, you are such an incredible mom. I'm sorry to hear that this has been a rough week for Tripp and your family. I'm praying that today is a better day for all of you.

    You are doing great work raising awareness about EB and sharing other people who are working to support families behind the scenes.

    Sending you lots of love!

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  31. Courtney, What a beautiful boy you have! Thank you so much for sharing your story. You and Tripp's strength are truly inspirational! Remember you are loved and so many people are keeping you and Tripp in our prayers. Warm wishes and may you be blessed in all you endeavors.

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  32. What a wonderful, beautiful little boy! You are an awesome momma! Lots of love and hugs to you!

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  33. Keep spreading your love to darling Tripp, the inspirational people in your life, and the world at large!

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  34. Wow, Courtney. I had never heard of EB before, so thank you for the education. I am so sorry you and Tripp and your family have to deal with such a difficult situation. However, it sounds like Tripp is really lucky to have such a loving and dedicated mom, and it sounds like you are lucky to have such a strong and loving baby boy. I'm wishing you both strength, health and love. Take care.

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  35. Tripp is such a sweet little boy. I am praying for strength and comfort for your family, and for a cure to this problem. It's because of mothers like you that we have awareness and cures in the making. God is watching you and prayers will continue to go up for you.
    God Bless You,
    Shelby

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  36. I admire your strength and courage. I think it is truly wonderful that you share your experiences and tell the world about EB. I had never heard of it before finding your blog, but now I know a little more about it. Keep fighting the good fight. I wish you, your wonderful little boy and your family all the best in the future.

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  37. What a beautiful family! Your life is an exceptional one, not because of your unique circumstances, but because of how you deal with them <3 Thank you for being an inspiration, and thank you for relying on the only One who can truly give you everything you and Tripp need! But we've got your back too ;)

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  38. Tripp was absolutely meant to be with a mommy like you; it's amazing, even being a brand-new reader and just dipping my toe into your posts & your story, how much you dedicate your heart, soul and time to ensuring the best quality of life for your little man.
    I'm sending strength and sparkles your way in droves <3!

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  39. Hey Courtney, Tripp's very lucky to have a loving mommy like you! Sending prayers and warm wishes your way!

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  40. Sending love and prayers your way.

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  41. Such a beautiful baby, I'd love to {gently} kiss those cheeks! Until I came upon your blog, I had no idea what EB was. Wow. You are so, so, so incredible. I'm sending much love and good thoughts your way.

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  42. How beautiful your son is, and how blessed he is to have you. I can't imagine how painful this whole process must be for you, and how much love you must have in your heart. Not only that, but the generous nature you show in taking the time tor recognize all these women who are helping you. Tripp is so blessed to have such a strong, loving, generous mommy, just as you are blessed to have him. Sending love and prayers to both of you from Michigan. <3

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  43. My heart goes out to you, beautiful mama. I hope you fell all the love that is being sent your way today. You are in my thoughts

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  44. This is the first I have heard of this disease. Thank you so much for sharing your story. Tripp is so blessed to have you as his mommy! Keeping you and your sweet son in my thoughts and prayers <3
    (Found you through Band Back Together)

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  45. You are such an amazing woman and mother. Sending hugs and loves to you all.

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  46. Sending love and light your way. So happy to have found you and your gorgeous Tripp!

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  47. Oh my goodness. Tripp is ADORABLE! I looked through your blog, and everything I see/read about him just makes me love him so much, even though I have never met him. (those 1st Birthday pictures?? PRECIOUS). He is just such a treasure, and is so lucky to have such a wonderful mommy.

    You are incredible, and you are inspiring. Sending up lots of prayers for your family.

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  48. This is the 1st I've heard of the devastating disease EB. Know that as the parent of your special child you are a hero. Much love and light to you!

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  49. Both of you are so incredibly courageous <3 Big hugs.

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  50. Tripp is so cute and he is one lucky little guy to have you as a Momma! You have so much strength and hope and are such an amazing mother. God will not give us something he can't carry us through. Many prayers for you and Tripp.

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  51. Courtney - what a blessed baby boy you have been given - and what a blessed mom! It may not be the life you envisioned but the strength, love, and beauty you share with the world shines through and most certainly makes a difference! May love surround you and your beautiful baby Tripp as you continue on your path.

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  52. I am sending so much love to you. You deal with such incredibly hard things, and you do it with such grace and care. Wishing you strength and peace, and help for your cause.

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  53. Reading about your story from your Love Bomb team, I was struck by the scope of the challenge you face. Reading your blog, I am even more forcibly impressed by the determination you bring to facing it, to embracing every means at your disposal to help your beautiful boy. And like so many other commenters, I love Tripp's smile. Sending love and prayers to you!

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  54. Courtney, just by reading a few of your posts it's obvious that you are an amazing, selfless mommmy to your beautiful Tripp. God has placed you on such a hard journey, but please know that you are doing it beautifully. God is revealing things about life to you that few get to ever understand. I will pray for strength for you and healing for Tripp.

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  55. What strikes me most about the pictures of Tripp is how joyful he is. It's a reminder to me, someone with a chronic illness, that you can find joy regardless of your circumstances. The image of your son's smiling face will now always come to mind whenever I feel like complaining. You both will be in my prayers. Hugs.

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  56. Sending you healing energy and love.

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  57. I love that you have found a community of people who understand. Keep up all of your good work. Sending love to you and your dear baby.

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  58. Courtney, my heart goes out to you and your family. My daughter is deaf and was born premature. Those weeks in the hospital were hell, and I can't imagine what you're going through, living with this day after day. Please feel the strength and love coming to you from people who don't know you, but feel connected to you in heart. I am praying for you and your little man, and more than that, I am going to spread the word about EB. I wish for you tiny joys throughout the days, and peace to sleep at night. You are such an amazing mother and an inspiration to many. I know as a mother, there is not a day that passes that I don't wish I could take the burden of being deaf from my child, but her strength and courage has taught me many lessons. Please know that you are both loved and thought of.

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  59. I've never heard of EB till now, and it sounds like a painful thing to go through. Your strength is both amazing and inspiring, and I wish both you an Tripp all the best. I'll be praying for you. xoxo

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  60. Sending you guys lots of love and light on your journey!


    #withtheband

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  61. That sweet, happy smile says it all. You're giving your child that joy, as he gives it to you - it is a wonder to see.

    Sending prayers your way for an easier week.

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  62. You are such an amazing person and mother. Sending you and Tripp so much love and positive energy!

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  63. Thinking of Tripp and your family. Everything about you guys is beautiful from the inside out.

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  64. I had heard of EB before reading your story, but you have put it back into perspective. Truly, we are blessed to have you tell your and Tripp's story, and remind us of the beauty and fragility of ourselves. Peace, and strength to you

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  65. I'm praying for you and your baby. Its so good that you are trusting in God through it all. Your little guy is beautiful.

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  66. You're strength, passion, and unconditional love for your son is amazing! Sending prayers your way!

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  67. Sending you all love and prayers!

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  68. Praying for your strength and peace as you love your sweet baby through this trial.

    Warm *Gentle* Hugs,

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  69. You guys are truly amazing! I hope you and Tripp can become happy despite all the hurdles you've faced and are facing. I'm a Buddhist and I chant (that's how we pray). I will definitely chant for you and Tripp.

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  70. Courtney, you are an incredible, strong, beautiful mother for your beautiful son Tripp. His joy is evident in your photos. You're both in my prayers. Thank you for sharing your story and your son with us all and for your beautiful display of what a mother's love is to her child.

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  71. I am sending you love and happiness and well wishes. Your son is lucky to have such a wonderful and caring mother.

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  72. Courtney, what an amazingly beautiful boy your Tripp is! You all are obviously an amazing family, and Tripp is blessed to have such a caring home! We'll be praying for your guys...for faith and courage and healing and love and all that wonderful stuff that He gives so freely of! God bless you and I hope you have a wonderful Thanksgiving and Christmas season with Tripp.

    In Christ - Jonathan

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  73. What a lucky little boy is to have such a strong mom! Thank you for writing raising awareness and enlightening me on EB. Bless you all as you continue on your journey.

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  74. you are such a strong momma... I am so proud of all you have done for him, and I am amazed at how far he has come despite the many obstacles I am sure you've faced! I am praying for you three today and always.

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  75. Simply love, hugs, and appreciation for all you are doing. Keep it up, you are amazing.

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  76. What a beautiful little boy you have! I'll be praying for and thinking of your family, and I hope that you and your gorgeous sun have a wonderful, infection- and pain-free holiday!
    Lots of love,
    Angie

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  77. Hi Courtney,

    Tripp is so precious. If you look past the blisters you can see happiness and joy on his face and you can tell that he so, so very loved. I'm adding Tripp and you and your family to my prayer list. You are full of faith and hope and I will pray for continued strength and peace.

    With Love
    Amie

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  78. I'm one of the many commenters who'd never heard of EB before, so you've certainly done your part to spread awareness ~ My very best wishes for your boy and your family. He certainly has a great mom on his side!

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  79. Those pictures are heartbreaking, but you are so positive! God bless you and your family, and hope for the best!

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  80. What an amazing and gorgeous boy, and what a blessing it is that you are his mommy. I'm parying love and peace to you all.

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  81. Oh wow... your story is such an inspirational one of unconditional love, strength, and strong faith. I'm glad that you have such a supportive community to be behind you. You are such a wonderful mother.

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  82. While I cannot imagine the strength you must possess to deal with this, I can thank you for staying a positive as you are. If there were more people like you the world would be a better place. Sending infinite amount of love and positive energy to you and your family today. Along with lots of smiles and kisses! :-)

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  83. Blessings for you and your family! xo

    #withtheband

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  84. Your blog is such a beautiful story of the strength and determination to overcome adversity. You are such a brave and wonderful mother, Tripp is very lucky and very lovely. Sending love and hugs, God bless xx

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  85. You are one amazing mumma! sending hugs and postive thoughts to you and your loittle boy. :)

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  86. Sending all my love and support to you and your son. You are so, incredibly strong- Tripp is so lucky to have a mom as devoted and determined as you are. You will both be in my prayers.

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  87. I have been going through a rough time in my life, to be honest I wasnt sure if Id make it through, but after reading your blog I have realized how important it is to be thankful for the little things in life.

    You and your family show so much strength and determination. I appreciate how much your life with Tripp means to you, every minute, every second is a blessing.

    Thank you for sharing your experiences with us. You are INCREDIBLE!!!

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  88. Reading Tripp's story broke my heart - and made me smile when I saw his adorable smile peering through in spite of everything. I am so sorry for all that you are going through and you are one wonderful and beautiful Momma which is so apparent through the love that you see on Tripp's face. You are in my heart and my thoughts and I'm sending you LOTS of love.

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  89. You are an incredibly amazing and inspiring woman, and your love for your son is beautiful. Thank you for being strong in the face of adversity and remember that it's always okay to cry: it never shows weakness, only compassion. Love and best wishes to you all!

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  90. You are so strong and so is your son. You have an amazing heart and you are so blessed by the family you have. Families are not born of blood and you have a support network that is there for you. You are one of the bravest people I have heard of.

    "Your heart is a weapon the size of your fist. Keep fighting, keep loving."

    Always thinking of you and your son,
    Eva

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  91. You are unbelievebly amazing, and Tripp is a really cute boy. All my strength to you two! C:

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  92. You are such a strong and amazing woman, Tripp is so blessed to have you as his mother. You wholly put your trust in God, and when you are having a rough time you step in closer to His embrace. He obviously has great plans for you and Tripp, and He will keep his pinky swear.

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  93. What a beautiful boy, and a beautiful mama! God sure knew what he was doing pairing you up :)Thank you for sharing him with us.

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  94. Courtney, you are such a strong woman. Going through your photos and some of the posts makes my heart hurt and at the same time warms me and amazes me to see such incredible strength from both you, your family, and your son. My prayers, my love, and my thoughts are with you. You are one amazing woman, and Tripp is an incredibly strong and lucky boy. Good bless you, dear heart.

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  95. I had never heard of EB before reading your blog. It's absolutely heartbreaking. You are such a strong mother and Tripp sounds like a wonderful, beautiful little boy. Sending many hugs and prayers to you and your family.

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  96. You're an amazing mommy and woman! Thanks for sharing your story and raising EB awareness. Little Tripp is absolutely adorable. Sending the gentlest of hugs to you both. Stay strong :)

    #withtheband

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  97. Courtney you are a mighty warrior fighting the good fight for you and Tripp. I pray for good sleep when you can, miraculous provision, and a comfort to your deepest places. Blessings to you on this amazing journey of love.

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  98. Praying for you and your sweet boy. I wasn't aware of this condition before today, your story has touched my heart. I love the poem on the left side of your blog, and agree that God chose Tripp for you and you for Him, how blessed you both are to have each other, and to be in His hands. Know that you are all Loved today and always..

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  99. What a sweet, precious boy you've been blessed with! And he's been blessed with a warm and loving family! I'll do my personal best to spread EB awareness - with little Tripp as my inspiration, of course! Praying for your family!

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  100. You and Tripp are amazing, beautiful and strong. I am inspired. :)

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  101. Thank you for speaking so openly and honestly about the challenges you face as you care for your son. I'm glad to have been informed about such a devastating genetic disease. I wish you and Tripp the happiest, and easiest of times as you continue through this journey. All will be well.

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  102. What an amazing mom you are. Tripp is a lucky, beautiful boy. God Bless you both. You're in my thoughts and prayers.

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  103. Praying alongside you during this journey! I cannot imagine what daily life must be like with such a fragile condition! Praising God for your courage and your attitude!

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  104. As many have said, I had not heard of EB until I came here and read, and I can only imagine what it must be like for you to deal with this. As a sufferer of severe psoriasis, I can relate to painful skin, though EB is a whole new level of pain. Tripp is a beautiful boy, and I just want to cover him with [extremely gentle] air kisses. Much love and blessings from our family to yours.
    #withtheband

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  105. Dear Courtney,

    I just looked through the photos - Tripp is adorable! He looks like having the time of his life, and he seems to be a real fighter.

    I had never heard about EB but am glad that I have learned something new. I can only wish you that you keep on being one proud mum for your darling and am ever so grateful that he has you and your parents to care for him.

    I'll follow your posts to know what's happening with you and will keep you in my heart.

    Hugs from Paris!

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  106. Thank you for sharing your journey. It is amazing to see you and your boy together...what a dynamic duo! I think you are amazing and that your boy is such a treasure. Blessing to you as you journey on. Praying and thinking of you.
    From Canada with Love.

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  107. Dear Courtney, your courage is remarkable and Tripp is so lucky to have such a wonderful Mommy! My heart goes out to you and I cannot imagine what every day brings for you and Tripp. Thank you for reminding me of life's joys and what love can do. May God continue to bless your family!

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  108. You and Tripp are so incredibly strong and amazing. It is such an inspiration to know that there are people out there trying to make the world a better place, even in the face of incredible adversity. I wish you both continued courage and perseverance in your struggle.
    With love from Colorado

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  109. Your optimism and bravery in face of Tripp's condition are so inspiring. I did not know that such a disease could exist, or was even possible. The complications that must arise with his situation seem like they would never cease. And yet, you are so optimistic. I am so amazed and encouraged by your bravery and your son's story. I will definitely follow this story with all my heart.
    Love from Nevada.

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  110. I admire your strength! What a lucky boy Tripp is! Good vibes!

    Lovebomber from Mexico
    Amber

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  111. Dearest Courtney, Thanks for sharing your experiences and for highlighting EB- as well as those working hard behind the scenes- with us. I'm inspired by your strength, courage, love, and faith. Trip is a gorgeous little guy! I wish you both peace and comfort.

    My mom named me after Dale Evans' daughter Robin Elizabeth. Mom read Angel Unaware so many times she memorized it, the story touched her that deeply. I wonder if you might enjoy the book as well? http://www.amazon.com/Angel-Unaware-Dale-Evans-Rogers/dp/0800754344

    Much love,
    Robin

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  112. Prayers for your family and for your sweet Tripp from Alabama. I saw a car with a Butterfly Fund bumper sticker on it yesterday and was unsure what it was. I am glad to be educated.
    You are so strong and amazing! Hold to hope!
    #withtheband

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  113. You and your son are amazing. Thank you for sharing with us. You and Tripp will be in my prayers. Don´t give up!!
    Lovebomber Cova

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  114. I had never heard of this disease before reading your blog. Thank you for sharing your story. It is great to hear about all the support that you get from such wonderful people and organizations. I hope that you continue to be strong and receive all the support you need. You will be in my prayers.

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  115. I got goosebumps as I read some of your posts. I also cried a bit. It's so wonderful that you're spreading the word about your beautiful boy and the disease he has. I'm sorry this has happened to your family, but you are such a strong young woman! I hope and pray things continue to get better for the two of you. Love and prayers sent from Green Bay, WI.

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  116. Sending much love to you and your family

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  117. May every breath bring your beautiful family peace, love, and strength. Thank you for sharing your story.

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  118. Love Bombing from Australia.

    You have mountains of love and strength for your beautiful baby boy. Sending you much love and light.

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  119. Love Bombing from Australia.

    Sending you much love and light.

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  120. Love Bombing from Australia

    Sending you much love and light.

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  121. My heart goes out to your precious boy Tripp and your family. I am thinking of you and sending you much love and strength from Celia in New Zealand

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  122. Love Bombing from Australia.

    Sending you much love and light.

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  123. Dear Courtney,
    Your faith, outlook, gratitude, and strength in the face of this difficult hand you and Tripp have been dealt is truly inspiring. You're an incredible mother. My thoughts and prayers go out to you and Tripp, and all the other kids with EB out there.

    Love from
    Hannah

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  124. This website speaks volumes of your love and dedication to Tripp. I am glad you have shared it with the world. You are an incredible mother that Tripp is lucky to have! I wish you much peace and love.

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  125. I have never heard of EB before, but I will help spread the word, now. How strong & courageous both you and Tripp are! I'm wishing you both all the best.

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  126. I hadn't heard of EB before tonight. You're a strong woman and Tripp is a fighter. Much love from Toronto.

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  127. Your strength is amazing to me. Thank you for sharing your story. Praying tonight for peace, joy, and laughter in your house. Love from Philly.

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  128. Praying for healing for your son and comfort and peace to settle over you and your family. Thank you for sharing this beautiful story and making us aware of EB. Hang in there girl, you got a lot of people praying for you!

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  129. You are an incredible family! Little Tripp is so blessed to have parents who will go as many extra miles for him as you have and will. Thinking of you, and praying for both of you and your precious son - that every moment is a blessing. Thank you for sharing your story!

    Hugs and love from a Lovebombing Stranger!

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  130. Thank you for sharing your story and spreading awareness about EB. I had never even heard of it until today, and I will definitely search more into it and try to spread some awareness myself. I am praying for you and your family as you work through the difficult struggles of this disease. You are such a wonderful mother to your beautiful boy and I hope you continue to remain strong in your support. You truly inspire me.

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  131. Tripp has taken a special place in my heart! His smiles are amazing. Sending you lots of love, strength, and (gentle) hugs. Thank you for sharing your story! xoxo

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  132. Your huge heart and capacity for love is so inspiring!

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  133. Praying for the best for you and Tripp!!!

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  134. Wow! What an amazing little boy. I can't imagine what you are going through and hope that you can feel the love being sent to you from around the world. Thank you so much for sharing your story.

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  135. Tripp is such a gorgeous little boy :) You are all incredible people. Sending you love from Australia. xoxo

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  136. You have a beautiful gift that's teaching you selflessness, I don't dare to imagine how tough learning that lesson is. Sometimes words are not enough for me to describe what I feel and reading your blog is definitely one of those moments. Thank you so much for being brave, strong and for sharing with us and reminding us what humbleness and service really are. The way you look at Tripp and his disease touched me and moved me to the core. And yes, God has a plan for him, thanks for letting us witness it as well. I am sending all my love your way.

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  137. You are such an amazing woman, and an amazing mother. I can't imagine being in your situation, but I can admire your strength and promise to support the causes you mentioned here. Your little boy is incredibly special and I am sure he knows how amazing his mom is.

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  138. A parents love is boundless. Everyday you live in the "now" with Tripp and I wish you much peace and love. Miracles do happen

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  139. I just finished reading through most of your blog, and WOW. you are an amazing mother and tripp is an incredibly special and unique little boy. the love that you surround him with is inspiring and is evident of God's love in your own heart. i am praying for your ongoing strength and courage in this situation.

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  140. What an amazing family you are! Just reading your blog helped me put my day into perspective. I have a son with Down syndrome, which can be tough at times, but I can't imagine the strength you have to take care of Tripp and make his life great. God bless all of you and I'm sending "virtual" kisses and hugs to Tripp. He is precious.

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  141. You have a beautiful son, and I just want to praise you for your courage as you help him cope with his condition. God bless you all!

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  142. I never heard of EB until reading this. Prayers and love sent to you and your family. Tripp sounds like such an amazing little boy, and you an amazing woman. Lots of love your way.

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  143. I never even knew what EB was til I saw these pictures. God bless you for being such an amazing mother to such an amazing little boy. You both are beautiful, and an inspiration and example to everyone else in this world. Thank you for being you and helping me have faith in humanity again.
    Stay strong! And smile, you're wonderful :)

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  144. I keep thinking about you and your sweet Tripp. I hope and pray that he is getting some comfort. I'm so excited to see you doing so well in the readers digest contest. Tripp and you deserve to have your store told. You guys are such beautiful people, inside and out!

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  145. This breaks my heart. I didn't even know about EB till I read this. I wish the best for you and your family. I don't really know what else to say other than my heart goes out to you and every family affected by EB.

    All the best,
    Sally xo

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  146. Dear Courtney,

    My heart breaks for you. I pray that they'll be able to find a cure for EB. Blessings to everyone who is helping families affected by EB. Tripp and your entire family are in my thoughts and prayers.

    Sending lots of love and hugs from Colorado Springs,
    Deb

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  147. I was just looking at my tinyprints catalog and on the back cover was delighted to see their fundraising efforts for EB. They arranged for celebrities to design cards which proceeds will benefit EB MRF! Check it out: http://www.tinyprints.com/celebrity-holiday-cards/

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  148. What is love? Just read this blog and you'll know.

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  149. Hello. I'm from Spain and I've seen your news through one page information here which is TELECINCO.I wish you the best in the world to you and your son Tripp.Y with the advances of today to find a solution and a cure for his son. You are a great mother.Greetings and much strength from Spain. (And sorry, No is English and I'm blogging with a translator if had some failure.)

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  150. I cannot even express in words how Courtney and Tripp have impacted my life. I cannot imagine having to go through what they are going through, and I am so hurt reading about what some people write...and I don't even know Courtney or Tripp. I think she's an excellent mother, and I so admire her love for her son; and, being a mother myself, I have a love for Tripp. Reading this blog has made me aspire to show my son the kind of love that Courtney shows Tripp...it causes me to hold him a little longer, to be thankful for him and protect him and just love him to the best of my ability. It puts my life into perspective, and I think Courtney is a stand up person and mother, so unselfish and doing GOOD even in the midst of dealing with this horrible disease. If I am half the person/mother she is, I've done well.

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