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Vol. LVIII, No. 18
September 8, 2006
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Marrow Transplant Success Makes Poster Child of Employee's Son

On the front page...

According to his father, Jaiden Thomas, 3, was going to be a poster child for something in life — football, music, track and field or just the sheer exuberance of living. After all, the kid is irrepressible.

"He once saw a commercial on TV for a football game," recalls Ufundi Thomas, a property accountable officer for NIDDK in Bldg. 8, "and as soon as it was over, Jaiden pretended to be the quarterback, hunching down over center, taking the snap and taking a 3-step drop back to pass. It was amazing."

Continued...

Jaiden has also amazed medical authorities by clearing a daunting set of hurdles. A survivor of two bone marrow transplants — the second involving a brush with death — the boy, who was born with a rare disease, is now thriving. Jaiden was recently named the National Marrow Donor Program's poster child for 2006.

 
Ufundi Thomas (r), a property accountable officer for NIDDK, plays with his son Jaiden, whose health was restored thanks to a bone marrow transplant.  

He was born in June 2003 "and the first few months seemed normal," said Thomas. In October of that year, Jaiden developed a serious case of vomiting and diarrhea, prompting his parents to bring him to Laurel Regional Hospital near their home in Laurel, Md. "They couldn't find anything wrong with him, so we brought him home," Thomas recalled. The same symptoms recurred a month later, and again Thomas took his only child to the hospital. "They put him through every test imaginable and still couldn't find anything wrong."

When the symptoms arose a third time in December, Thomas and his wife Tennille, a social worker for the District of Columbia, sought help at Children's National Medical Center in D.C. Doctors there noticed an unusually high concentration of a certain protein in Jaiden's urine. Soon thereafter, they reached a diagnosis — IPEX (inherited polyendocrinopathy X-linked) syndrome, a disorder apparently caused by a mutation to the FOXP3 gene and generally fatal to males within the first year of life.

"Basically, his immune system treated his body as if it were foreign, and started to attack itself," Thomas said. The disease affected Jaiden's kidneys, pancreas, skin and other organs as it progressed.

Jaiden kisses his mother Tennille in a 2006 poster sponsored by the National Marrow Donor Program.

The boy was hospitalized for virtually all of 2004, chiefly because he could be fed only via catheter, and because he underwent two bone marrow transplants from unrelated donors. The first, undertaken in March 2004 with cord blood, was rejected, but the second, which took place in September with hematopoietic stem cells and a better match, worked completely, though not without complication. Shortly after the second procedure, Jaiden's lungs filled inexplicably with blood. "We almost lost him," said Thomas. But doctors put him on an ECMO (extracorporeal membrane oxygenation) machine as a last resort and four days into the lung-bypass procedure, which was initially expected to last at least 2 weeks, Jaiden recovered and was taken off the machine.

 
Jaiden was 2 when he posed for publicity photos, but is now 3 and attending preschool.  

"He awoke one day like it had never happened and started playing with his toys," Thomas said. "They couldn't find out why it happened and there was no evidence of any lingering problems."

Thomas said that arranging the transplants was surprisingly stress-free. The National Marrow Donor Program found useable matches for Jaiden almost instantly, within a day. He added that the ordeal of year-long hospitalization was not as burdensome as it sounds: "To be honest, it wasn't that stressful," he said. "We prayed about it, and left it in God's hands."

The family also had extraordinary support, both from extended family members and from coworkers. Thomas said that almost everyone in Bldg. 8 knew about Jaiden and kept up with his progress. They also raised funds to help defray the family's expenses. In addition, Thomas's father came down from Camden, N.J., to live with him and Tennille throughout Jaiden's hospitalization, and his mom visited almost every other weekend. Ufundi and Tennille took turns staying overnight at Children's during 2004, alternating home and hospital duties.

Jaiden now stands 3 feet, 2 inches tall, weighs 45 pounds "and basically picked up where he left off before he got sick," said Thomas. "This is a kid who ran before he learned to walk. He loves running, he loves football, he loves to sing and play instruments. He's a very, very happy kid. He smiles all the time. He has no fear of anything. He jumps off the steps. He jumps off the couch."

Although still dealing with diabetes type 1, hyperthyroidism and mild hypertension, Jaiden is outwardly healthy and energetic. His parents check his blood sugar three times a day, and he sees the doctor monthly now, with visits to the transplant experts every 3 months.

The Thomases enjoy a family moment.

Thomas said NIH medical expertise was especially welcome during Jaiden's ordeal. "Dr. [David] Harlan [chief of NIDDK's Diabetes Branch] was very helpful answering our questions about the transplant procedures. All of my coworkers were really helpful and comforting, really mind-settling."

Because Jaiden spent so much time in the hospital — much of it without the ability to take food by mouth — he has had to regain two key oral functions: eating, which came quickly, and language acquisition, which was somewhat stunted by his having missed the "babbling" stage of speaking. "He didn't interact with other kids while in the hospital, except through a glass window," Thomas said. A speech pathologist has been helping Jaiden overcome his language deficits. "His vocabulary has gotten huge," Thomas said, "but he's still acquiring language."

Despite these challenges, Jaiden starts preschool this month with his peers. His face adorns the NMDP's donor registration campaign for 2006. "He's probably not aware of [being a poster boy]," said Thomas, "but if you met him, you'd think that he was," he adds with a laugh.

Thomas, a 6-year NIH veteran, hopes to enjoy a long career here, and wants also to realize a dream of opening a business — a sports bar. Jaiden might one day find himself on a poster there, too.

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