T-shirt sales to support spinal surgery for child, 3
“Sweet Marley,” the three-year-old child with a rare disease, will undergo a spinal fusion surgery on Monday, Feb. 17 at Dell Children’s Hospital in Austin.
Marley Bedford, the daughter of Crystal and Jonathan Bedford, suffers from Rhizomelic Condrodysplasia Punctata (RCDP), a disease affecting fewer than 100 children nationwide, but one that causes congenital cataracts, severe bone and joint deformities and mental retardation.
While previous 5K runs helped support the family defray medical costs, this month’s major surgery put a crimp on organizing a road race.
But the public can support the family by ordering an “I’m sweet on Marley” T-shirt (order deadline is Friday). Adult shirts are $15 and kids’ sizes are $12 each. Shirts may be ordered through the “Smiles for Marley” Facebook page or by emailing the family at [email protected].
“I was thinking about 20 or 30 people would want a shirt, and the orders are now well over 300,” Crystal Bedford said Monday. “It’s so nice to know that people are thinking about her or praying for her. The town really supports Marley.”
While the Bedfords were told to take the child home and call hospice — most children with RCDP don’t see their first birthday — Marley is now a three-year-old who is walking and talking.
“None of the other kids walk or talk,” Bedford said. “While she’s delayed, she is progressing and doing all of this amazing stuff. It’s sort of baffling to the doctors.”
Still the family has had to endure the toll and financial strain of constant surgeries for the child and Marley’s care continues today with the help of nearly a dozen medical specialists.
Marley is the namesake of the yogurt and sandwich shop “Sweet Marley’s,” which closed Jan. 31 so the family could concentrate on the child’s care. Sweet Marley’s will continue to operate a trailer at Enchanted Rock State Natural Area, Bedford said.
“We opened the restaurant to help raise awareness about the disease,” Bedford said. “The restaurant contained a photo wall featuring Marley and other ‘Rhizo Kids’ and information about the disease.”
The T-shirts are made locally at Blue Ribbon Company.