Friday, July 9, 2010

Happy FIRST Birthday, Daylon!!

Today is Daylon's FIRST Birthday.  He, like Tripp, has Junctional EB... and was also told he was not supposed to see his first birthday.  Daylon is currently in Minnesota.  He is the FIRST Junctional EB patient that is going through the BMT (Bone Marrow Transplant).  He is in the PICU right now on a ventilator due to the harsh effects of the chemotherapy.  I was literally in TEARS reading Daylon's blog this morning, because:
1.) Everything his Mommy said explains exactly how I feel about Tripp.  It just made me realize how much you just can't understand what an EB parent goes through unless you're living it.
2.) I remember being SO upset at Tripp's first birthday because he couldn't open his eyes- and here is Daylon, in PICU, fighting for his life and celebrating his first birthday on a ventilator.  Yet, his parents and his family are thankful, optimistic and full of faith.  What a blessing these children are.
3.) Daylon's story holds such a special place in my heart and hits so close to home.  He's going through this horrific fight, not only for himself but for Tripp and the other Junctional babies out there.

PLEASE read about Daylon here.  And please send his parents and his beautiful family (he has FOUR brothers and sisters) your thoughts and prayers!  WE LOVE YOU DAYLON!

Dear Daylon, 
Hey buddy.  I know you are going through a rough time right now, but I just wanted to wish you A VERY HAPPY BIRTHDAY!  You made it, man.  My mommy always tells me that I am tough, but you are sure showing me up :)  You are one strong boy.  Mommy says to tell you THANK YOU... she says you don't know it yet, but you are doing such a brave thing for all of us other EB babies out here.  You are my HERO.  Mommy says that one day when we both start feeling better, that we are going to meet.  I can't wait to meet you and give you a big hug for all of this hard work you are doing.  She did say, though, that I have to share my toys- I'm not too good at that... but that's something Mommy and I will work on :).  You keep being strong, buddy... and I'm going to keep saying extra prayers for you to feel better soon.  I just know you're going to be alright-- us EB kids are the toughest around.  Please know that you have SO many people who love you and who are dancing for joy that you have reached this VERY special milestone. 
Lots of Love... Your friend, 

I also want to let you guys know about Beautiful Bella... She is also in Minnesota going through the BMT.  She has Recessive Dystrophic EB and is also in PICU on a ventilator.  She and Daylon are just a few doors down from each other.  Bella also has such a beautiful family.  Bella's dad writes on their blog... please read their journey here.  He has such a great sense of humor and brings out the positives in every situation.  Bella and Daylon are the most recent transplant babies.  Their stories help to keep me grounded.  Both of their bone marrow came from sibling donors- Ali and Caleb.  I love these kids and their families... and I've never met them.  I know you'll fall in love, too.  

Also, I wanted to give everyone a list of the other EB children that are going through this extremely difficult time (the Bone Marrow Transplants).   
Please keep these children in your prayers... as they are fighting for the cure. 

Tripp had a really good day yesterday.  His eye is still very swollen... and I can't really see in it, but I thought that piece of skin was still there in the corner.  I don't know.  But anyway, he was smiling and playing yesterday with practically one eye.  Yes, he is an angel baby.  I talked with Zainab's daddy (the other Junctional child in Canada who had the AMT) and he said that it took the swelling a few days to go down and then her eye was as good as new!  If we can only be that lucky!  Trach-wise, he has been doing pretty well... I've gotta give it to ya, God... yes, Tripp has issues with EVERY SINGLE part of his body, but at least You are giving us one issue at a time.  Thank you ;)  If Tripp heard me say that, though, he'd probably say... "MOM, are you NUTS?"  But it's true... I guess I'm trying to say that it could always be worse.  I am thankful that he's able to give me those beautiful smiles everyday.  Man, I love this kid. 



  1. Wonderful written Courtney! You have a BIG heart. love to you!

  2. Courtney you are "Great" & have a heart of gold. I have been following these other EB children & have been praying for them & their families as well. I can't write & explain this like you are the other Angels parents can, like you said you have to be a parent to these special EB children to do that. God bless you, Tripp & all the EB Angel's.Love,prayer's, continue for a cure to this dreadful disease be found soon. I'm sure hoping with each day Tripp's eyes continue to heal. Keep up the hard work Tripp you are my hero.


    Let's not forget EJ!

  4. Courtney, Thank you so much for all of the kindness you've shown to our family and especially Daylon. I loved the the letter from Tripp! That's something we'll cherish forever. I'm printing it out and putting it in Daylon's scapbook so he can always have it to read and look back on. Thank you so much! Praying for you guys always! Love, Jennifer

  5. Thanks for sharing all our stories with your readers, Courtney! BMT is quite a journey, indeed, and all the support we've received has helped us stay strong because we know we're not alone. Thank you so much for the very same courage you display every day. I am equally inspired by how strong you are for Tripp. It helps me stay strong for Bella. Cheers and blessings to your wonderful family. Tim

  6. I don't know how you EB mamas do it..strongest women in the guys help me be a better mother and teach me to count my blessings everyday!


  7. Courtney, Just wanted to let you know that some of us "strangers" out there have fallen for your little man, Tripp, as well. I love reading your blog and what an incredible post to include Bella and Daylon updates too. I visited Bella last week and saw first hand how special and AWESOME EB parents are. Tripp is so blessed to have you as a mommy.
    - Jen (Anqelique's friend)