Raylea Black - Rubinstein Taybi Syndrome

Hi, my name is Erica Murphy and I am fundraising for Raylea Black to attend the RTS National Conference in Ohio where she will receive medical attention from specialists and researchers who have committed their practice to working with patients diagnosed with this very rare syndrome. Raylea has been selected as one of the few patients to receive a one-on-one appointment with a specialist in the field.

About Raylea: As an infant, Raylea was diagnosed with an extremely rare condition. So rare, she is the only documented case of her kind in the WORLD. She’s not just one in a million, she’s one in millions. While other patients have been diagnosed with the rare RTS syndrome, Raylea is the only known patient to have her specific genetic mutation.

As special as this makes her, it is quite the anomaly for healthcare professionals. This summer, Raylea will have the opportunity to travel to Cincinnati to receive medical attention from the best doctors in America who have committed their practice and specialty to her condition.

Why now: The national conference is scheduled at random, and is not an annual event. If Raylea doesn't attend the 2023 gathering, it is unknown when the next opportunity will present itself. This is why she must attend the conference this year. An incredible opportunity like this also comes with steep costs. This fundraiser is to help Raylea and her parents get to Cincinnati to be seen by researchers and medical professionals who specialize in Rubenstein Tabyi Syndrome. As being the only documented case in the world, their family is hopeful the physicians and researchers will be able to provide insight on how to continue her treatment. As a result of RTS, Raylea is also suffering with Failure to Thrive.

How you can help: Raylea's trip to the RTS convention comes with a steep investment that would be difficult for most families. By donating, you are helping fund flights, hotel, car rental/shuttle, meals, and other costs that are incurred during her trip. The Black family is deeply grateful for the love and support of our community and appreciate you considering supporting this important trip for Raylea.