As you all know, we are at that Barth Conference in Clearwater Beach Florida. We have met other families who are living with Barth’s. We’ve heard from Doctors and specialists who specialize in Barth’s. I cannot even begin to describe the amazing time we are having learning all about the disease our sweet Wally is suffering from.
But today, today has been by far the most emotional. A lot of tears were shed. Today, doctors, amazing people of the Barth Foundation, men living with Barth’s, and family members were able to discuss what it’s like living with Barth’s in a room full of people, most importantly people from the FDA!! To sit and listen to the other families tell their stories. To older boys/men living with Barth syndrome telling their stories and the struggles they live with everyday… to FINALLY be around amazing people who “get it”. These brave individuals were able to plead their case on why it is so important we need these clinical trials, medicines, but most importantly a cure!
I cannot even begin to express how much AJ, Wally, and I are humbled to be a part of such an amazing group of people from the first moment you meet them, automatically feel like family! I think about leaving on Sunday and not seeing our Barth family for two years and my heart aches. I cannot even begin to explain how amazing it feels to have people understand what we are going through. To understand the struggles, the triumphs, the fear, the worry, but most importantly the love we feel and go through on a daily basis. There’s no having to explain why Wally’s so small. No questions asked why he doesn’t take the whole bottle by mouth. Oh it’s medicine time? Wally needs a nap? Wally’s hot? We get it.
I’m having a hard time finding the words to explain how amazing it all is. I sit here with tears in my eyes trying to wrap my head around all the different emotions I’m feeling. To have this whole new family that we get to be a part of, that will understand everything we have and will go through, well let’s just say we are eternally grateful.
And let me tell you, these Barth boys/men are the most sincere, polite, kindest, compassionate, most down to earth people I’ve ever met! I can only hope and pray Wally takes after them. And the way they love the younger Barth Boys and take them under their wings melts my heart. Wally loves a particular Barth man John Wilkins who is living with Barth Syndrome. Johns mom, Sue is one of the founders of the Barth Foundation. Amazing family. Wally just lights up every time John comes and talks to Wally. It’s the cutest thing! I must remember to get more pictures!!
Well it’s been an exhausting week. But I just had to share my emotions and feelings about today. I’m still trying to wrap my head around all the different emotions. All I can say is, I’m so glad I contacted the Barth Foundation, but most importantly, Shelley. And I am so happy we were able to attend this amazing conference. It has truly been life changing.
Thanks for reading.
Wally snuggling with Mrs. Brandi! Another Barth Momma to an amazing son Deacon! A person who I so look up too and admire! (Don’t mind his PJS. Daddy brought him down during our women’s discussion session 🤣🤣)