Billy Watkins, The Clarion-Ledger9:04 p.m. CDT June 14, 2015
Bryce Purvis, 10, of Lexington looks at his blood pressure reading after being checked by his mother, Dawn Ashley, an LPN at the Lexington Primary Care Clinic in Lexington. Bryce was born with a rare disease that has caused his kidneys to fail and will receive a transplant from his father, Todd Purvis.(Photo: Rick Guy/The Clarion-Ledger)
LEXINGTON – Bryce Purvis started walking at 13 months and stopped a month later.
He stopped eating, too.
He was constantly thirsty, constantly urinating. His mom, Dawn Ashley, is a licensed practical nurse. She tested him for diabetes. “But that wasn’t the problem,” she says.
She and other family members would stand him up and urge him to walk “and he would scream,” Dawn says. “We didn’t know it then, but putting pressure on his legs like that caused intense pain because of a lack of potassium.”
In the spring of 2006, when Bryce was approaching his second birthday, he was finally diagnosed with nephropathic cystinosis, a rare genetic disorder that attacks the body’s cells and causes a buildup of cystine in various organs. It causes slow body growth, muscle weakness, light sensitivity to one’s eyes, and possible kidney failure.
Now 10, Bryce will undergo a kidney transplant Thursday at the University of Mississippi Medical Center in Jackson, with Dr. James Wynn performing the procedure.
Bryce’s dad, Todd Purvis, is the donor.
“Giving Bryce an organ … I can’t think of anything more rewarding than that,” he says. “I’m excited because I know he’s going to feel better after this, if everything goes as planned.”
It is the first case of cystinosis seen at UMMC in the past 10 years, says Dr. Omar Rhaman, a geneticist and associate professor of pediatrics and neurology.
Rahman deserves credit for diagnosing Bryce, much like a detective solves a crime.
“We are always looking for clues,” Rahman says. “I remember seeing Bryce just after he was a year old. His family felt like they had exhausted all efforts to find out what was wrong. It’s what I refer to as a diagnostic journey, and it always feels good to help end that.
“We found clues in his urine, using extremely specialized tests. And his eyes were evaluated, looking for crystals. That’s a sign of cystinosis.”
Rahman reached out to Dr. William Gahl, one of the few cystinosis experts in the world. Gahl is based at the National Institutes for Health Clinical Center in Atlanta.
“The genetic community is rather small, so we are always helping each other,” Rahman says. “But Dr. Gahl was so valuable in treating Bryce. He walked us through it step by step as far as what medicines he needed and what to watch for. His wisdom has been invaluable.”
Thirty-six pills. Twice a day.
That’s what Bryce has to swallow to help regulate his blood pressure, increase his potassium, improve his appetite, boost his energy.
“And that’s much better than it used to be,” Dawn says. “We used to have to take that many every six hours.”
A few months ago, Bryce’s kidney function had weakened to the point doctors were considering putting him on dialysis.
“When we met with Dr. Wynn, he said ‘Why do that? Why not just go ahead and do a transplant?
“I was elated when he said that because I knew that would be the fastest way for Bryce to feel better,” Dawn said. “But once they gave us a date for the surgery … I’m still elated, but the seriousness of it has started to set in.”
Wynn calls the three-hour surgery “straight forward.”
He will take the donor kidney — about the size of a fist — and place it in Bryce’s abdomen, behind his intestines. Bryce’s kidneys won’t be touched.
“It’s not a complicated surgery,” says Wynn, a surgeon who specializes in kidney and pancreas transplants. “Some larger hospitals may do 30 or 35 (pediatric kidney transplants) a year. At UMMC, we do a handful a year.
“I think this is the perfect treatment for a patient like Bryce, to go ahead and do a transplant before he ever goes on dialysis. It should help from the standpoint of growth and increased activity.”
Todd Purvis is expected to be hospitalized for three to five days with about a two-month recovery time. He is taking a short-term disability leave from Nissan in Canton.
Bryce is expected to remain at UMMC between 10 days and two weeks, then return for out-patient weekly checkups, which hopefully become yearly checkups.
Bryce, who has blonde hair and blue eyes, is like most 10-year-old boys. He loves riding his bike, shooting basketball and playing video games.
“He has a basic understanding of what is about to happen,” Dawn says. “He know he’ll be in the hospital for a few days, that they’ll have to cut him open to put the kidney in there — and that the hospital has a lot of video games to play while he recovers.
“He has no recollection of when he was really sick. He was too young. But we’ve been to the doctor and in the hospital enough for him to know there is something wrong, and he wants to feel better. That’s what we’re praying for. There isn’t many things harder than watching your child suffer.”
Dawn’s mother, Cindy Winstead, has kept Bryce during the day for years while Dawn is at work.
“Trying to figure out what was wrong about drove us crazy,” she says. “I looked all over the house, wondering if it could be something he was getting into that was making him sick. It was heart breaking.
“I remember sitting in the hospital with him not long ago when they were drawing his blood. He never cried, he just watched them stick the needle in and take the blood.
“I told him, ‘You’re my hero.’ He just smiled and said, ‘I’m kind of used to needles now.’ I’m nervous about the surgery, but it’s time. It’s time for our baby to feel better.”
Contact Billy Watkins at (769) 257-3079 or bwatkins@jackson. gannett.com. Follow Billy Watkins @BillyWatkins11 on Twitter.
Read or Share this story: http://on.thec-l.com/1SdLO0o