In a special unit at Riley Hospital for Children in Indianapolis, 16-month-old Cadence Elizabeth Rigden of Fort Wayne is spending this week fighting off an infection that has slowed a stem cell transplant she so desperately needs.
Born with Hurler syndrome – a genetic disease that afflicts one in 100,000 children – Cadence is in need of an umbilical cord blood transplant containing stem cells.
A thickening tongue is part of the disease and affects eating and speech. But Cadence already speaks using sign language and loves to imitate her nurses. “It would be heartbreaking to lose those skills,” Draper said.
The average lifespan for an untreated child with Hurler syndrome is 10 years, according to the nonprofit Children’s Organ Transplant Association, or COTA, which is working with Cadence’s family to help them pay for the $100,000-plus transplant. Donations are being accepted at any Fort Wayne Chase Bank branch, and proceeds from bracelets and bottled water sold at a COTA booth during the Auburn Cord Duesenberg Festival, to be held Aug. 31-Sept. 4, will offset travel expenses, food and housing for Cadence, her mother and father, Matthew Rigden.
The actual transplant is covered through Medicaid disability, but other expenses are mounting quickly.
Of children with Hurler syndrome, the average time from symptom appearance to diagnosis is 2 1/2 years, past the age when a stem cell transplant can be effective.
The infection she is battling was found in a site where a medication tube enters Cadence’s chest. All signs are good that it is clearing up. The transplant could happen on Sept. 8, barring no other complications.
How to help
♦Make a donation at any Chase Bank branch to account No. 2722047897; write “In honor of Cadence Rigden” on the memo line. An appointed trustee and Children’s Organ Transplant Association staff review all expenses submitted before reimbursing the family.
♦Purchase a bottle of water and a bracelet at the COTA booth at the Auburn Cord Duesenberg Festival in Auburn, which is Aug. 31-Sept. 4.
♦Look for other upcoming fundraising events for Cadence Rigden sponsored by COTA.