When Anthony Byrd’s son, Xavier, was born, something didn’t feel right. A closer look at Xaier’s face using a heat lamp revealed that something was indeed not right.
Following that, were two years of investigating and after several tests, the diagnosis became clear at John Hopkins: Schinzel-Giedion syndrome. This rare neurological disorder results in severe midface retraction, skull anomalies, renal anomalies and other anomalies. Babies born with Schinzel–Giedion syndrome suffer through mental retardation, growth retardation and global developmental delay.
There are only 50 recorded cases. Byrd was stunned.
Xavier’s parents wanted to know everything there was to know about this disorder so that they could dedicate their lives to treating their son.
Their efforts led them to Kennedy Krieger, a non-profit that cares for sick and disabled children but also searches for ways to treat disease through hardcore research and fundraising. Fundraising, however, proved difficult with such a rare disease. There weren’t other families to contact or any organizations currently working on treatment for it.
In order to seek out more funding, Kennedy Krieger will be selling artwork called “The Zebra Alphabet” located at Monument Sotheby’s International Realty.
The artwork was created by renown artist Aditi Kantipuly and consists of 26 paintings that are a full representation of 26 rare diseases. There are disorders of the eyes, even neurological problems, each for sale individually or as a series. The artwork is meant to connect and educate people about these rare diseases that not enough people talk about.
At the same art show, students from Kennedy Krieger have their own artwork on display. All proceeds will go toward the school’s programs.
“I think they really enjoy being able to express themselves in different ways that they might not be able to in other classes,” Anna Livingston told ABC2 News in Baltimore.
Sadly, Xavier passed away in January. He was seven.
Anthony Byrd thinks about his son every day and hopes that his son’s legacy, like the Zebra Alphabet, will raise awareness and leave a mark in the world.
