Xtraordinary Joy
Donazione protetta
Our beautiful Moriah Joy was diagnosed at 16 months with an extremely rare chromosome abnormality. She is missing 46 genes on her X chromosome. There are less than 10 recorded cases in the world. Because it is so rare, there are no treatment options. There is no disease name, no scientific research, no awareness events. It has taken us months of seeing specialist after specialist with no understanding of her condition to help us realize it is up to us to help her.
We have been blessed to connect with two other families in the United States who are going through this with their daughters, so that we have somewhat of a community. Together we understand the fears of the unknown results of these missing genes.
We feel called to start a foundation, Xtraordinary Joy, that will advocate for these girls' special needs and recruit revolutionary research efforts to discover treatment options.
We invite you to be a part of something great, eXperience the JOY of helping establish the groundwork for helping our girl and others.
Read more at www.xtraordinaryjoy.org
We have been blessed to connect with two other families in the United States who are going through this with their daughters, so that we have somewhat of a community. Together we understand the fears of the unknown results of these missing genes.
We feel called to start a foundation, Xtraordinary Joy, that will advocate for these girls' special needs and recruit revolutionary research efforts to discover treatment options.
We invite you to be a part of something great, eXperience the JOY of helping establish the groundwork for helping our girl and others.
Read more at www.xtraordinaryjoy.org
Organizzatore
Amy Meacham
Organizzatore
Gainesville, FL