Hello Friends! Happy Global Genes Day! Around the world, many folks are raising awareness of rare genetic diseases! So little is known, as we have learned with my deletion. Here is what my Mommy wrote on Facebook today. She loves me, but she loves ALL little kids, too!!
"7,000+ rare diseases-..1 in 10 Americans have some sort of rare disease-50% are children-30% won't live to see their fifth birthday-95% have not one single drug treatment.
Those statistics speak volumes.
My genetics appointment spoke volumes.
There needs to be more research..there needs to be better documenting and tracking. If we can learn from each others cases and find treatments for these kiddos then there is no reason they can't live a long happy life!
I am so blessed to be apart of this. After genetics so far only one other kiddo is close to Wyatt..that gives us the amazing opportunity to beat all odds and raise the bar. He is walking..he can say some words..and most importantly he is so so happy. No matter what the battle in our future he is so strong and so brave with so many people in his corner. He might take his time to get there but we will all be there waiting to cheer him on! I love you Wyatt and I am so lucky to be apart of this journey."
"7,000+ rare diseases-..1 in 10 Americans have some sort of rare disease-50% are children-30% won't live to see their fifth birthday-95% have not one single drug treatment.
Those statistics speak volumes.
My genetics appointment spoke volumes.
There needs to be more research..there needs to be better documenting and tracking. If we can learn from each others cases and find treatments for these kiddos then there is no reason they can't live a long happy life!
I am so blessed to be apart of this. After genetics so far only one other kiddo is close to Wyatt..that gives us the amazing opportunity to beat all odds and raise the bar. He is walking..he can say some words..and most importantly he is so so happy. No matter what the battle in our future he is so strong and so brave with so many people in his corner. He might take his time to get there but we will all be there waiting to cheer him on! I love you Wyatt and I am so lucky to be apart of this journey."
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