Parents hope new gene therapy will save their son
Thu Oct 04, 2007
By: By Erin Hatfield
DURHAM — Bright blue eyes open wide, Parker DesLauriers stuffs his chubby cheeks with toddler crackers. Full of smiles and giggles one would not think this 20-month-old Ajax boy has already struggled through more than most will in an entire lifetime. “When he was born no one thought there was anything wrong with him,” says Parker’s mom Tracy (Kulas) DesLauriers. “You think, as long as they are born with all their little fingers and toes, they are okay.”
But Parker wasn’t. He was born with severe combined immunodeficient (SCID) adenosine deaminase (ADA) deficiency. It’s a condition commonly referred to as “bubble boy,” but Ms. DesLauriers said honestly, she hates that term. Parker is far from living in a bubble. His world may be drastically different from most, but as he runs and plays throughout his home his parents have a new hope that an experimental gene therapy has saved their little boy.
ADA means little Parker has a seriously compromised immune system. It’s extremely rare and in the past 20 years, Ms. DesLauriers said the Hospital for Sick Children in Toronto has treated a mere 15 patients.
“It is a really hard situation,” she said. “When you get married and buy a house and have children, you think things are going so well and then life throws you something like this.”
It began when Parker was just a few weeks old and Ms. DesLauriers noticed her new baby had rapid breathing, as high as 120 breaths a minute. He was taken to the Hospital for Sick Children where they started screening him for a myriad of diseases and conditions and found he had none of the major components of the immune system.
That led them to test for various immune deficiencies and diagnosed Parker, at six weeks old, with ADA.
As soon as he was diagnosed, Parker was put into complete isolation, where every precaution was taken to protect him from illness. He was in the hospital for five months, unable to meet any of his new cousins or extended family members.
“He’s such a nice little boy,” Ms. DesLauriers said. “He’s always happy and smiling. It was just so sad that other people couldn’t experience that part of him as well.”
Kevin DesLauriers, Parker’s dad, has a background in science and immediately started to research treatment options: a bone marrow transplant, enzyme replacement therapy and a relatively new treatment called gene therapy. A bone marrow transplant posted major problems for Parker, so they decided against it and started enzyme replacement, but the injections cost $2,500.
Once his immune system built up slightly with the enzyme replacement injections, Parker was taken to Italy to undergo the gene therapy treatment, which involves harvesting bone marrow, extracting stem cells, genetically altering them and re-injecting them.
“The good thing about gene therapy is that his body will produce the enzymes now,” Mr. DesLauriers said “We don’t know what will happen 10 to 15 years from now, but for right now it could be a cure.”
The goal, they said, is that by the time Parker is of school age, his immune system will be to a point that he actually can go.
Today, Parker is back home, running and playing in the open spaces of his house in Ajax, something Ms. DesLauriers said he has never been able to do, having spent the last seven months living in a hotel room in Italy.
“It is not how you expect to spend your maternity leave,” she said. “I longed for the days that I could take him to play groups.”
The family returned to Ajax last week and have learned how to deal with the ADA. Their home must be kept exceptionally clean and guests must hand sanitize before coming in.
“It gets to the point that you can actually become obsessive with that, but that is no good either,” she said.
The DesLauriers are facing a great many stresses in their life, from the constant cleaning and worrying, not to mention the tremendous financial impact.
“You have to make a conscious decision to take a really crappy situation and make the best of it,” she said. “I am just so thankful Parker was born into a family with two strong parents who can deal with this.”
Both are teachers and Ms. DesLauriers has been off work for two years while Mr. DesLauriers has been off for a year and a half. Mr. DesLauriers is now looking to make a career change and trying to find a job, but the costs of caring for their son are enormous.
“We are hoping to get some more fundraising done to get us through the next while,” she said. “We are just getting through the next chapter.”
Now they will take Parker to The Hospital for Sick Children every two weeks and at the end of May they must travel back to Italy.
Mr. DesLauriers chronicles Parker’s journey on a blog, www.scidada.blogspot.com, which has received a quarter million hits.
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