John Paul Storey was born with a rare condition called thrombocytopenia-absent radius (TAR) syndrome. He has abnormally short arms and is missing his radius and ulna bones. His right leg is fixed at with no joint separation at the knee. He is an adorable baby who has been born into a loving family who is prepared to give him the special care he will need for a lifetime.
Arriving on March 11, 2013, John Paul is the fifth of five sons born to Jill and Patrick Storey of Culpeper, Virginia. The Storeys found out that their child had TAR before he was born, and consider themselves blessed with a son whose unique individuality will become an integral part of their family lifestyle.
At the request of Storey family friends Russ and Cathy Carolla, Azalea Charities has joined several community groups and businesses to support the Storey family with financial help for travel and medical care for John Paul. A luau fundraiser was held in June with over 150 people attending.
Azalea Charities is handling donations for this effort. The funds will be used for gas cards and other transportation expenses for the Storeys to travel to the hospital in Charlottesville, Virginia for John Paul's medical care. Funds will also pay for a laptop computer to allow Mrs. Storey to track expenses, communicate with care providers, and provide updates on John Paul which we will post on our Facebook page.
According to Frank Lasch, Chairman & Founder of Azalea Charities, "We have a family of love, a community of caring. What better opportunity for Azalea Charities to exercise their compassion and support."
With five sons in a very small house that will need to be adapted for John Paul's long-term needs, the Storeys are in need of more space.
I just wanted to write to you and tell you how much I have appreciate having the laptop that Azalea Charities has given us. Last week I took John Paul down to the clinic in Charlottesville for a routine platelet transfusion. During the transfusion, he contracted a bacterial infection and he was transferred to the ER and consequently admitted to PICU until his condition stabilized. He ended up staying in the hospital for five days, and since he still exclusively breastfeeds, I was there with him the whole time.
Because I had my laptop with me, I was able to keep family and friends up to date on his condition, read and write emails, etc. My other boys had a hard time being away from their mom, but at least I could skype with them at nighttime and they could then see John Paul as well.
Anyway, I was extremely grateful to have it, and I thank you for making it possible.