Friday, October 5, 2012

14th Annual Mats Wilander Benefit

This past Monday, October 1st, was the 14th Annual Mats Wilander Tennis and Golf Benefit for DebRA that I had mentioned in a previous post.  I was chosen by DebRA as an honoree for the event and flew to NYC to attend and give my speech and to be a part of this great cause!  

The event was amazing.  
I met so many amazing people, some of them being people that I have talked to on the phone countless times but never had the opportunity to meet. 

Brett Koplean, who is the Executive Director of DebRA, took such good care of my Mom, Dad and me when we got there.  He got our flights and hotel in order, got a car service for us, and showed us around the city!  I'm so grateful for him and his wife, Jackie, for treating us so nicely.   
The EB community is really full of wonderful people! 

I got to meet Mr. Bill Cornman and Mrs. Danielle Malchano from National Rehab, where I would get Tripp's bandages.  They were so great.  I used to speak to Bill at least once a week for a while.  And got to know his voice pretty well.  But it was so nice to finally get to hug the man that went above and beyond to help me so many times- when I was beside myself stressing and worrying about bandaging materials.

I also got to meet the other honoree for the event, Dr. Phillip Reilly, who has been extremely involved with EB research.  Dr. Reilly is on the right of me in the picture below... and to the left is Dr. Jakub Tolar (whom I met and spoke with when I went to Minneapolis about the BMT for Tripp).  It was SO SO nice to see him again.  Both of these men are amazing and passionate about EB treatment and research.  It was an emotional day, for sure. 

I got to meet Leslie Rader.  I've mentioned her here on my blog several times.  She was the first  EB mom that I spoke with after Tripp was born, who lost her little girl at 7 months old.  Getting to finally hug her was amazing and very comforting. 
(and yes, she was VERY tall :) 

Every time we checked the weather for Monday, it was supposed to rain, but God gave us the most perfect day.  It was cool, sunny and absolutely beautiful.   

And I got to meet the fabulous Alan Kalter, the announcer from the David Letterman Show.  
He was amazing.  After dinner, he did the live auction for the event.  
He was really a great guy... 

And the one and only Mat Wilander... 
who begin this fundraising event because his son Erik suffers with the milder form of EB (Simplex), whom  I believe he said was about to be 16 years old. 
From 1982-1988, Mats won 7 Grand Slam singles titles.  
In 1988, he was ranked the #1 tennis player in the world.  
Obviously, I'm a little too young to remember seeing him play (since I was born in '85...) but my dad sure does.  And it was pretty cool to get to see him playing with everyone.  And even better getting to hear him speak at dinner that night about his son and his passion for finding a cure for EB. 

Even my sweet friend Mandy flew up to the event. 
 She volunteered all day so that she could be there for me and get to hear my speech :) 

This picture is for the very nice man and his nephew who wanted a picture coming out of the clubhouse... Sorry I forgot to get your email so that I could send it to you! 
I hope you'll find it :) 

 My daddy golfing with his caddie:) 

I also got to meet sweet Miles... 

And precious Ava Rose... who suffers with Junctional EB, and is so similar to my sweet Tripp in so many ways.  It was heart-breaking to see her.  But at the same time, she warmed my heart in ways I can't explain.  These kids are truly amazing.  
And so are their incredible parents... 

She reminded me so much of my sweet boy... 

                                                Some pretty amazing fellow EB Mommies... 

Brett Koplean presenting Dr. Tolar with a $200,000 check to go towards EB research.  
Pretty amazing, right?? 

This little angel and her family hold such a huge place in my heart. 
It's hard to explain what I felt being around her.  
She had the same shining little personality as my baby boy.  
I can't say this enough... the children and adults suffering with EB are just super-human. 

I am so humbled to have been able to be a part of this event, that raised A LOT of money for DebRA of America.  It was something I will never in my life forget.  The way so many people came together for this cause was incredible.  
I am SO proud to be a part of the EB community and SO proud to be Tripp's Mommy.  



  1. God Bless you Courtney - and God Bless all the babies/children/adults suffering from this disease and their families. After hearing of Tripp I am doing my best to contribute to DEBRA in the hopes that some day there will be a cure. Now I am following little Baby Easton who is such a precious little thing and suffering from EB. I hope you post your speech when you get a moment.

  2. Love to see the people that are getting involved with and supporting Debra to help find a cure! Thanks for the update!!!

  3. So many awesome people coming together! Tripp has been so instrumental in raising awareness and funds for research, you are so courageous to continue his legacy.

  4. I am so glad you got to go!

    I just had to tell you we LOVE Ms. Ava and she is Anton's girlfriend (just don't tell her Dad).

    Love you Courtney!

  5. That little girl... just melted my heart.

    What a wonderful event.

  6. Courtney,

    Jackie and I were so happy to have met you and your wonderful family. You always have a place to stay in New York. Your speech was moving and you really made people understand what it was like to be a parent of a child with EB. There wasn't a dry eye in the house. You were great. Jackie and I look forward to seeing you again.

    Brett Kopelan

  7. Wow I can't help but notice the connection between you and Ava Rose in the photos... you are both beaming!
    Well done Courtney, you are doing amazing work xxx

  8. Thank you for the work you continue to do! All EB parents and kids are amazing. Seeing those pix of Ava Rose made me miss your darling boy, Tripp.

  9. Dear Courtney,

    In 20 years of nursing I'd never even heard of EB until Ava & her family came into my life.She melts my heart with that smile! I loved her as soon as I met her.I'm so glad you connected with Ava & her wonderful family. Thank you for all you've done & continue to do for the EB community, despite the tremendous pain I'm sure it evokes.

    Sheila in NJ

  10. So beautiful Courtney! How did your speech go?

  11. GREAT GREAT GREAT couple of posts! Holy Cow, what a great trip! Congratulations on the award, you deserve it! It's an amazing community full of amazing people. We are blessed to be a part of it, and to share its beauty with the rest of the world. I had a similar experience when I met Jackson Baldwin in MN in June... time stood still as we bonded together... I can completely relate! Sounds like you just had magic moment after magic moment. Really great to to see and hear. Much love, Tim and Ang

  12. What a wonderful experience for you! I'm so happy you had the opportunity to be there!

  13. That sweet baby just lit up around were the best mommy Tripp could have ever hoped for!

  14. Tripp must be so happy! adn sooo proud of his mommy
    Lots of love from Spain

  15. So happy the event was such a a success and that you were such a part of it. Also so happy you got to visit Elmo and the butterfly garden:) Still thinking about and praying for you and yours, inspired by you and your little man everyday. Much love!

  16. Very long story of how I found your blog. I definitely won't post that all on here. :) I have only read these last two posts and read what you wrote about your amazing son Tripp. He will never be forgotten and he has touched my soul and changed my life forever in just reading about him.
    Courtney what can I do to help? How can I personally help bring awareness, volunteer and keep Tripp's memory alive. I would sincerely like to help.

  17. What amazing experiences you are having! What a world Tripp touched.