Changed dreams

Amarillo child needs new liver to survive

By BRANDI DEAN
brandi.dean@amarillo.com
Amarillo Globe-News
Publication Date: 07/29/05

Until six months ago, Drew Perkins imagined his son, Canon, growing up to be a star athlete.

But at the baby's 9-month wellness check, the doctor noticed something was wrong with Canon's liver, and after numerous tests, he was diagnosed with glycogen storage disease type 4, a rare degenerative genetic disease.

Although Canon seems perfectly healthy - blue eyes, bright smiles and delighted shrieks - the Perkinses found out about seven months ago that, without a liver transplant, Canon would not be expected to live past age 4.

Now Drew Perkins' hopes for his son have simplified a bit.

"It's interesting how that changes your perspective," Drew Perkins said. "Being an old coach, I always assumed I'd have a quarterback and a point guard. But that's not important anymore."

As soon as they realized something was wrong, Drew and Chandra Perkins got to work on what was important: getting Canon healthy. Now 16 months old, Canon has doctors in Lubbock, Dallas and Houston in whom his parents have a great deal of confidence.

Unfortunately, the physical problem is not the only one they have to worry about.

"The doctor tells you your child needs something and you just say OK," Chandra Perkins said. "We did all the little stuff, the appointments, and then comes the financial conversation."

Canon's insurance will pay for $250,000 of the $600,000 the Children's Organ Transplant Association, a national charity that helps families raise money for transplants, estimates that the Perkins will need for transplant expenses. To Chandra, a fourth-grade teacher at Will Rogers Elementary School, and Drew, an assistant principal at Travis Middle School, the number seems unattainable.

That's where COTA comes in. Under the organization's direction, the Perkinses have appointed people to help them raise the money, and the first fundraisers for Canon's transplant fund - a lemonade stand and a luncheon - are set for this weekend. Before the campaign started, $10,000 has been donated through the Perkins' Web site, CANON.mgmorrow.com, giving the family a little room for peace of mind.

"We've been able to kind of take a step back," Chandra Perkins said. "We have a local campaign coordinator, a media coordinator and an account trustee. That's one thing that COTA told us: As parents, all we can focus on is keeping him well."

And that is something they're more than eager to do.

"He's the best baby ever," Chandra Perkins said.

"Bubbly," Drew said. "Happy. He would definitely fall in the easy-baby category."

The Perkinses haven't noticed that Canon's illness causes him any pain, so for now the doctors are waiting to put him on the transplant list. Chandra Perkins said unless his health takes a turn for the worse, they'll wait until fall to put him on the list. The doctors, she said, want to get him a new liver before he turns 2 in March, when the disease becomes a greater risk.

Even if the Perkinses don't raise the entire $350,000, Canon will still get the transplant; it won't be refused on the basis of money. But that would leave the Perkinses with hefty bills for years to come and a couple of other looming worries: the threat that Canon's transplant might fail and he'll need another. There's also the possibility that Canon's brother, who is expected to be born in the next few weeks, will have the same disease. Because GSD4 is a genetic disease, the new baby has a one-in-four chance of inheriting it.

Ways to contribute

· Buy lemonade from Canon’s friends, Dane and Dayton McIntosh - a third-grader and a first-grader, respectively, whose mother baby-sits Canon. They’ll be selling lemonade for donations between noon and 5 p.m. Saturday at the Tascosa Road Wal-Mart. “Donate Life” bracelets will be available for $2.

· Donate $7.50 for a ticket to a fundraising lunch that will follow the 10:50 a.m. service Sunday at the Perkins’ church, Southwest Church of Christ, 4515 Cornell St. Call 352-5647 to make reservations.

· Visit the COTA Web site, www.cota.org, to make credit card donations; make tax-deductible donations in person at any Bank of America to account number 004811297985; or mail checks or money orders, payable to “COTA for Canon P.” to Children’s Organ Transplant Association, 2501 COTA Drive, Bloomington, IN 47403.

More fundraising events are in the works. To help, call 352-4114 or 358-3702.

Transplant Info

· There are 50 children in Texas waiting to receive new livers, according to the Organ Procurement and Transplantation Network, 849 in the United States.

· Eight of the Texas children have been waiting longer than five years. The only organ needed by more children is the kidney; 63 Texas children are on the waiting list for one of those. And 23 Texas children are on the list for a heart transplant. In 2004, 17 children died before receiving an organ; six of them needed livers. The Perkinses said they were told Canon’s transplant has a 90-percent survival rate, but that the 10 percent who don’t survive usually have other complications.

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