A brother and sister from Alabama, who are the first known siblings with a rare and potentially deadly disease, were also among the first children to undergo a new kidney transplant method that researchers say rules out the possibility that the organs are rejected.
Kruz Davenport, 8, and his 7-year-old sister, Paizlee, have Schimke’s immunoosseous dysplasia, or SIOD, a rare form of dwarfism that causes a weakened immune system, kidney failure, skeletal dysplasia, back pain, migraines, and risk of stroke and seizures.
Patients also have a life expectancy of nine to eleven years.
The siblings’ parents, Jessica and Kyle Davenport of Muscle Shoals, started a foundation when Kruz was diagnosed — the Kruzn for a Kure Foundation — which sends $30,000 a month to Stanford University to research a cure for the disease.
These donations led to a groundbreaking new transplant method involving Stanford doctors, dubbed “dual immune/solid organ transplant,” or DISOT, which Stanford said transplanted bone marrow stem cells from the donor to the patient and then transplanted a kidney medicine.
Kruz received bone marrow stem cells and a kidney from Jessica while Kyle donated his to Paizlee.
According to Stanford, DISOT can prevent organ rejection while eliminating the need for immunosuppressive drugs.
Such drugs have to be taken for life by organ transplant patients and have serious side effects, including an increased risk of cancer, diabetes, infections and high blood pressure.
On Wednesday, Stanford Medicine announced that Kruz, Paizlee and another child were the first three patients to undergo DISOT — and all three are doing well at least 22 months later.
The Davenport siblings are “healed and recovered and doing things we never thought possible,” Jessica Davenport said in a statement.
The couple, who just finished first grade, are looking forward to swimming lessons, camping and attending day camp this summer — activities that would have been impossible without the transplants.
“They are walking wonders,” said Jessica Davenport. “It’s really cool that they’re paving the way for other families to experience the same things that we’ve had the privilege of experiencing.”
Doctors who have been working on the new technique are now investigating whether the method could be extended to other patients, including pediatric transplant patients who have already refused a donor kidney.