Easter Seals announces ambassador for Walk With Me Delmarva event set Oct. 16

A diagnosis does not define a person or what he can be. Kirstin and Matt learned this when their son Bryson was born with TAR syndrome, a genetic condition so rare that even the doctors did not know what to expect. Receiving a diagnosis like this can be scary, but Easter Seals helped Bryson and his parents realize his full potential.

"In the beginning, we did not know what we were doing. TAR syndrome is so rare. We were terrified of the unknown," says Kirstin, Bryson's mom. "Easter Seals has been there since the beginning. The therapists are great. They have become our extended family."

Bryson started receiving physical and occupational therapy when he was two months old and later began speech therapy as well. TAR syndrome means Bryson is missing lower arm bones. He is also in danger of brain bleeds and prone to bruising because of low platelets in his blood. Taking all these things into consideration, Easter Seals therapists helped Bryson strengthen the muscles in his hands. roll over, sit up and get around by scooting since his knees are too weak for him to walk yet.

Bryson, who is now 15 months old, is working on standing on his own and taking steps. With proud parents and therapists cheering him on, he is making gains and keeping up with kids his age.

"When he was younger it was hard to see other kids do what he couldn't do yet," Kirstin says. "Bryson is just like any other 15-month-old. He wants to do what every other kid is doing. He wants to play. He may have physical differences so he does things differently, but he is just like any other kid. He wants to go, go go!"

Early on, Easter Seals therapists incorporated a modified, ride-on car into his therapy goals. In cooperation with Cole Galloway, an engineer from the University of Delaware, the GoBabyGo! cars are used in Easter Seals therapy sessions and on loan to families to encourage mobility and independence. Bryson's Go Baby Go! car helps him stay on the move and go places he wants to go, especially when he is outside, where he can't scoot around. The car gives Bryson the freedom to choose where he wants to go.

Down from two to three times per week, Bryson still receives platelet transfusions every 10 days. The trip for the family is over an hour one way. Kirstin says they appreciate the flexibility Easter Seals offers by seeing Bryson in his own environment at home. It is one less place the family has to travel.

"I love Easter Seals and everything it represents! The therapists are always willing to work with us and be Bryson's advocate. He is who matters, and everyone is on his team," Kirstin says. "At first Bryson's needs were all very overwhelming, but it gets easier when you find people on your side, like the people at Easter Seals."

Bryson is this year's ambassador for Easter Seals Delaware and Maryland's Eastern Shore's fourth annual Walk With Me and Run for Us Delmarva event set for Sunday, Oct. 16, at Baywood Greens in Long Neck. It will unite hundreds of participants to raise funds for Easter Seals services in order to impact the lives of local individuals and families living with disabilities.

For more information or to register, go to www.walkwithme.org/delmarva or contact Linda Forte at 302-253-1100 Ext. 1121 or lforte@esdel.org. To learn more about how Easter Seals helps children and adults with disabilities, call 800-677-3800 or go to www.de.easterseals.com.