Community Raising Money For People With Rare Disorder
A benefit concert in Sand Springs is raising money for people suffering from a rare disorder. It's estimated about 30 people in the entire world are living with Arterial Tortuosity Syndrome. One of those patients lives right here in Green Country.
If you saw six -year -old Aiden Taylor out in public, you would have no idea he's battling a rare genetic disorder.
"My name is Aiden. I have Arterial Tortuosity Syndrome. Please help us research."
"Arterial Tortuosity Syndrome is an extremely rare genetic connective tissue syndrome that is known for causing the arteries to grow too long, to kink and to twist," said Aiden's mother Andrea Taylor.
Andrea said doctors diagnosed Aiden with ATS at the age of two.
"He had a very severe hairpin kink in his left pulmonary artery which was restricting the blood flow to his left lung and causing his heart to enlarge at age 2," Andrea said.
Aiden is the first ATS patient in the U.S. to have open chest surgery to reconstruct his pulmonary artery.
"My biggest fear is of course losing Aiden and that would be the hardest thing any mother has ever faced. Another big fear is never finding answers," Andrea said.
Since ATS is so rare, research is limited. After learning about Aiden's syndrome, his mother became determined to find others dealing with the disease.
"We know of nine families living in the us right now, including ours," Andrea said.
The discovery of these other cases prompted Andrea to start a non- profit called A Twist of Fate- ATS.
Broadway Baptist Church in Sand Springs heard about the non-profit and decided they wanted to raise money for ATS. so they organized a benefit concert for Saturday July 19th. All proceeds will go to the non- profit to fund research, studies and patient doctor meetings.
" We need help and there is no doubt these kids need the research and medications and diagnoses process."