Family seeks help for child with rare disease
by John Tawa
In May, longtime Manhattan Beach residents Rick and Lynette Cambra got the news no parents ever want to hear. Their youngest of four sons, 10-year-old Ty, had Adrenoleukodstrophy ("ALD"), better known as "Lorenzo's Oil Disease."
The symptoms became acute during the past year.
"He was vomiting and weakening," Lynette explained. "It would be difficult for him to walk from the kitchen to the front door without having to stop to rest. At the same time, during school, we noticed dramatic changes in his ability to learn, to pay attention. It looked like he was having some major learning disabilities."
After Ty's adrenal glands failed in April, a test of the very long chain fatty acids in Ty's blood revealed that he had ALD.
For most children, the diagnosis is a fatal one. ALD is an extremely rare genetic disorder that deteriorates the myelin, the fatty coating of nerve cells in the brain. Depending upon where the disease attacks the brain, an ALD child may experience symptoms of paralysis, blindness, deafness and dementia, before dying a slow, painful death. There is no cure.
Ty's a wonderful kid," said Lynette, who has lived in Manhattan Beach all of her 44 æears. "He's shy, but he really has a great sense of humor. He likes videos and playing video games with his brothers."
He's the littlest of my boys," Rick added. "He was the one that I will have been able to plan the most for. We couldn't save for college for the older kids, but Ty was going to be the one who could have whatever he wanted. To have something like this happen is absolutely devastating."
Because ALD is genetic, when the Cambras learned about Ty's illness, they also were told that their other sons, 20-ear-old Lucas, 17-year-old Joel and 16-year-old Ian, had a fifty percent chance of also having ALD or its adult counterpart ALM and that mother Lynette was most likely a carrier of the genetic defect.
"You want to know terror," said Rick between tears at his tree section home. "Terror is finding out your 10-year old son has two years to live, and every one of your boys has a 50-50 chance of getting the disease that has no cure."
Fortunately, tests showed that the Cambra's other three sons did not have the disease. Tests also showed that Lynette was not a carrier.
"Ty had a broken gene from birth," Rick explained. "No one really knew. One of the problems with this disease is it's so rare and unknown. Our doctor in Torrance, who's been a doctor for 40 years, had never before seen a case."
Doctors in Los Angeles told the Cambras to find out everything about this disease.
"What I found out later they meant was that Ty was going to slowly deteriorate and we were just going to have to live with it, to deal with the symptoms," Rick said.
In June, the family began a search for anything that might help Ty. They contacted ALD experts in Minnesota and Maryland. They found out that there was hope for Ty, if he could have a bone marrow transplant and have it quickly before he suffered further deterioration. The transplant plant would not cure Ty of any damage he already had suffered, but it would save his life and stabilize him at his current level.
Cambra's three sons were tested, but none was a suitable match. In July, a donor search was conducted - at the Cambra's expense after the insurance company refused to pay for it - and a match was found. There was hope.
"At the brokerage house, I'd put some cash away for each of the boys," Rick explained. "I took money out of the accounts of the three older boys and from our account to pay for the search, but I didn't touch Ty's. Because it's got to be there for him when he gets well. That's the way I have to think."
The transplant is scheduled for Oct. 14 in Minnesota. The facility, which has performed 30 of the 126 transplant procedures ever conducted worldwide, is the finest in the United States.
Cambra, Lynette and Ty travel to Minnesota on Sunday to begin preparing for the procedure. Rick and Lynette will stay with Ty in Minnesota during his four-month hospital stay. Lynette quit her job as a teacher's aide at Meadows School and Rick, a government executive with the Federal Aviation Administration, has been reassigned to Minnesota on a temporary basis. Rick and Lynette's parents, also longtime Manhattan Beach residents, will watch over the other boys. Lucas is a junior at UCI and Joel and Ian are at Mira Costa High School.
Rick said there is a 65 percent chance that the transplant will be successful.
"It's not like a light switch that once he has the transplant, the disease shuts off," Rick explained. "It takes six months for the progression of the disease to stop, a year before we start breathing easier."
"It's the only possible thing we can do," he continued. "What we're hoping with Ty is that this is preemptive. Ty's got a relatively healthy body. They're going to replace the bone marrow so that the protein can work and the disease doesn't progress anymore."
The transplant itself will cost $300,000. Cambra estimates additional medical expenses at $200,000 minimum. After initially rejecting coverage, the insurance company agreed to cover 90 percent of Ty's inpatient care and 80 percent of his outpatient care. That still leaves a shortfall of $100,000-$150,000.
With the help of the National Transplant Foundation, the Cambras have set up a foundation for Ty, chaired by Dr. Rocky Wilson, Rick's longtime friend from coaching the Hurricanes Soccer Club together.
Called the National Foundation for Transplants for Ty Cambra, it accepts tax-deductible donations on Ty's behalf and pays for the treatment that insurance doesn't cover.
Donations for Ty's transplant expenses may be made by mailing a check to National Foundation for Transplants for Ty Cambra, P.O. Box 901, Manhattan Beach, CA 90267-0901.
Ty's campaign also is advertised at www.transplants.org/patient/tblbmt.html
"We've got a year when Ty's going to be the focus of our lives," Rick said. "Nothing else matters anymore." ER
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