This is one of my favorite photos of my nephew Bryce. He is a perfect, beautiful peanut.
I've have had the opportunity to meet such wonderful people in the blogging community, I wanted to share with my dear friends my nephew's struggle that has been on my mind, as well as my family's mind, every single minute, of every single day, for the past few months.
Bryce Thomas, at 5 1/2 months, was diagnosed with
Krabbe Leukodystrophy, a rare and terminal genetic disease. With Krabbe, Bryce does not produce a key enzyme known as galactosylceramidase and this affects the growth and maintenance of myelin. The lack of this enzyme results in demyelination and an excess of globoid cells, which are toxic. As a result, children with Krabbe slowly lose their motor functions, have seizures and muscle spasms, and go blind and deaf before losing their life. The average life expectancy of a child diagnosed with the early infantile form of Krabbe is 13 months.
I can't begin to put into words the range of emotions I have experienced and have witnessed my husband experiencing. Knowing the amount of pain my brother and sister in law are feeling is excruciating. This is all so unfair. However, I feel so fortunate to witness such an amazing little boy exert so much strength, fighting for his life, each and every day. His story is inspiring. His parents, Kyle and Jenna, are inspiring. I have so much admiration for how they have handled every aspect of this horrible situation, all for the love of their little boy.
They are rockstars.
Why am I sharing this on the blog? I think the power of social media can be used for good. I've seen it done and have no doubt people in this world will continue to use it for good. For example, Keith has had the opportunity to work with wonderful young men at the University of North Carolina-Chapel Hill. Last month, the Tarheels took on the Cincinnati Bearcats in the Belk Bowl. Starting Quarterback, Marquise Williams, spoke with the media about Bryce and dedicated his game to him. WRAL published a story on Marquise and Bryce
"When Football Takes a Back Seat."
See Marquise's blue band? That is his BSTRONG band. We all wear one for Bryce. Marquise and several members of the UNC Football team wore theirs during the game. These special players also took to twitter and raised awareness for our nephew out of the kindness of their own hearts. Keith and I will be forever grateful.
This is Uncle Keith and Bryce minutes after they got to meet for the first time last summer. Like many of you, we live hundreds of miles apart from our family - and specifically in times like this, we feel the distance.
Both families have created a website -
thebstrongfund.org - you can go and follow Bryce's story, support the family financially and ultimately raise awareness for such a rare and awful disease. We are raising money to support Bryce's parents, two public school teachers, with growing medical costs, measures to keep Bryce comfortable and content and anything else they find themselves needing during this time. There is also information on the website on how you can get your own
BSTRONG band.
I ask for you to keep my nephew in your thoughts and prayers and pray for the continued strength of his mom and dad. Please share
thebstrongfund.org with friends and family.
