Published : Tuesday, 31 Mar 2009, 9:20 PM CDT
When it comes to exercising, jogging underwater might be the last thing Nick Hanson wants to do, but he knows it's the only way he can build up his strength and endurance.
"This is hard work in water," he admits.
In fact, for the first time in his life, he's getting a real workout. You see, Nick is like no other kid in the entire world.
"He was born with the deck stacked against him," said his mother, Carolyn Hanson. When Nick was born, his parents knew something was wrong when the bleeding during his circumcision wouldn't stop. It took five days for the Hanson's to get answers, the first one that Nick was afflicted with hemophilia, a rare disorder where a person has little to no protein needed for normal blood clotting.
"We just sat their dumfounded on the edge of the bed we didn't know what to say," said Nick's father, Paul.
But the young boy's health issues didn't stop there. Nick started getting sick, time and time again, and when he reached the age of four, he already suffered a dozen bouts of pneumonia.
"You feel helpless, you really feel helpless," Paul said.
Soon, Dr. Ralph Shapiro, an immunologist, would have an answer to that puzzling ailment too.
"He has problems in his thymus that gives him an immune abnormality that is important in regulating immune responses," Shapiro said, telling the Hansons it all stems from DeGeorge Syndrome, a rare disorder caused by a large deletion from chromosome 22. It's a complex disorder associated with a wide variety of symptoms. Many DeGeorge children suffer from cardiac issues. But while Nick escaped those problems, he suffers from a diminished immune system caused by DeGeorge that leads to many infections.
"The combination is bad because when you have DeGeorge syndrome you are a lot more prone to auto immune problems," Shapiro said. "And when you are getting factor replacement for hemophilia one of the complications is developing anti-body to the factor and he may be more at risk."
Nick had now been diagnosed with two rare disorders that are not associated with each other, according to Dr. Shapiro.
"It's a real odd thing. I don't know any other patient that has both of these disorders."
Nobody in the entire world.
"Getting either one is a long shot, getting two together it's like hitting two royal flushes back to back but not in a good way," said Nick's dad, Paul.
And even though Nick says he doesn't feel like other kids his age, it doesn't stop him from being just one of the boys, sitting with his buddies and playing guitar hero, despite joint pain caused by the hemophilia.
"He knows there are things that he can't and will never get to do that other children do that gets him down sometimes," Paul said.
And one thing Nick wishes he didn't have to do is answer constant questions about his health problems.
"I'm like super tired of telling people what hemophilia and DeGeorge syndrome is. If someone asks me it's like ahgg."
Which is one reason why Nick and his family were so eager to tell their story, hoping to educate the public on the 12-year old's rare disorders. Like many of us, the Hanson's were misinformed about hemophilia, the disorder that affects just 25,000 Americans.
Now, with the water therapy Nick is undergoing, things are looking up for the young man. Last year at this time Nick was in a wheel chair due to severe ankle pain, but just two months of jogging and exercising in the water has kept Nick on his feet this year.
"It's getting more easier to me. Because my joints are getting more stronger so I can do more stuff, Nick said.
Chimed in Mom Carolyn, "I would hope that this water therapy will give him more energy for land activity, will keep him on his feet and out of his wheelchair."
And more like other children his age while scientists continue researching gene therapy that many believe will be a reality sometime in Nick's lifetime.