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Article in the Mountain News |
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Written by Rob Raymond
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Wednesday, 06 February 2008 |
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Taken from: www.hamiltonmountainnews.com
Mountain boy pleads locals to get onto bone marrow registry, help him survive
Julie Slack, Mountain
Austin Huinink desperately needs a bone marrow transplant, but so far, he hasn't been able to find a match.
Eight-year-old Austin Huinink just wants to be like other kids. He wants to be able to play hockey, baseball and ride his bike.
Instead he's handing out pamphlets at baseball games, asking people to join the bone marrow registry so he has another chance at life.
Austin isn't like other kids. He can't play hockey, he has to stay inside for recess and he has to arrive at school 15 minutes before the other kids and leave 15 minutes before school gets out so he doesn't get bumped in the hall. It could cause a bruise and for Austin that usually means a trip the hospital and quite possibly yet another transfusion - he's already had 29.
He has a rare disease called Aplastic Anemia (AA). This extremely serious disorder results when the bone marrow fails to produce blood cells. There are only two to four new cases per million population per year in North America.
In Austin's case, he was diagnosed last October. His mom, Anita said he came home from school with red marks on his chest; they looked like broken blood vessels. He was tired all the time. Being an RPN, she felt is was something that should be looked at.
They went to the hospital and initial blood work looked like Austin's diagnosis was going to be leukemia. Instead it turned out to be a much more rare disease, severe AA.
"Our world came to a complete halt," Ms. Huinink added.
Treatment for this includes twice-daily doses of the steroid cyclosporin, which taste, "horrible, really awful," says Austin. He also has to make trips to McMaster Children's Hospital two- to three-times a week to have his blood levels tested.
Treatment is unique to each individual and in Austin's case, the first involved horse serum, a marrow-stimulating drug therapy; still he needed many transfusions to temporarily manage symptoms and help to give him some energy.
Four months after he began that treatment, he relapsed and doctors switched his serum to rabbit. So far, it is a temporary treatment until he finds a bone marrow match.
Austin is tired when he wakes up in the morning when his levels begin to drop.
"There have been more than a couple of scary moments," admits Ms. Huinink.
One such moment occurred earlier this month when Austin had three uncontrollable nose-bleeds. They ended up in emergency, facing another transfusion.
The bottom line is that Austin needs a bone marrow transplant and so far, there's nobody on the Canadian Blood Services (CBS) Unrelated Bone Marrow Donor Registry with a match suitable for him.
For the young Grade 4 student at George L. Armstrong school, this is difficult to understand.
"I don't get why someone wouldn't want to donate (bone marrow) to save someone's life," he offers.
CBS has a mere 219,000 Canadians on the registry. Potentially, anyone who is 17 to 50 years old, healthy and willing to donate stem cells to anyone in need, can be on the list.
Needless to say Austin's mom and dad, Bernie, went through the testing. His mom is a very close match, scoring 9/10, but she is unable to donate because of a thyroid condition she developed eight months after Austin was born.
In 2001, she gave birth to a stillborn daughter, Brianna, which doctors attributed to a clotting problem. She went for a bone marrow biopsy at the time and was diagnosed with thrombocytosis, which is too many platelets in the system.
When Ms. Huinink got pregnant with her third child, the pregnancy was extremely draining. She had to be cautious of so many things, she refused to share her news until he was born. She was induced early to prevent another stillbirth and Brandan was born. He too has blood issues with clotting, Antiphospholipid Syndrome.
Typically, siblings make great matches, unfortunately, Brandan is not.
Everyday is an uphill battle for the Huininks. Their lives have been put on hold to be able to deal with his illness. Ms. Huinink had to quit her job and the family had to figure out how to live on one income. They had to pull Austin out of his favourite sport last winter, as hockey is too risky.
But the team rallied around him all season, even wearing the letter A on their jerseys, and getting the word out to parents about the importance of getting onto the bone marrow registry.
In the summer, he joined the Eastmount Park Baseball league, but doctors felt that was a big risk as well, considering he could get hit by a ball.
He played outfield sometimes, when he was healthy enough. At the end of the season, his team won trophies, which he proudly displays on a shelf in his central Mountain home.
Because he doesn't have cancer, Austin is unable to participate in many of the camps for sick kids. He did, however qualify for a Children's Wish donation and he and his family enjoyed a trip to Disney World earlier this year.
He also received special guest family passes through Give the Kids the World to places like Canada's Wonderland, Darien Lake and Seabreeze Park in Rochester. These have to be booked two weeks in advance, though, so that makes it difficult, especially when Austin's blood levels can change so quickly, forcing him into another hospital stay.
Because he's sick though, many day camps in the city refused to allow him to join. Fortunately, he was able to participate in Kidz Klub's Kooking Kamp, run by Kathy Archer. He also takes part in Kidz Klub throughout the school year.
Last year, he missed 76 days of school, including six weeks just prior to Christmas, when he was extremely ill, fighting fevers, . Ms. Huinink stayed by his side at Mac, where they learned what so many parents of sick kids discover in a ward filled with children in various stages of illness. Sleep is a rarity, the world stops and you wish for a healthy child.
Other days, they've had to anxiously await the arrival of blood from Toronto when Hamilton's supply has become non-existent.
And, like so many of the sick kids, Austin has collected three strands of Bravery Beads, featuring varying colours for different tests and treatments, and specialty beads for emergency visits and surgeries. Austin had a port put into his chest so he didn't have to go through traumatic needle jabs for blood, so that was another special bead.
The Huininks find themselves knowing too many statistics and figures and wondering, as so many before them have, why more people don't donate blood or join the bone marrow registry.
To keep in touch with so many caring friends and family, they joined the Caring Bridge website (www.caringbridge.org) to be able to quickly keep people up to date on Austin.
They've also utilized the power of Facebook, through a friend, Ron Giles, who has made it his lifelong commitment to find marrow donors for a few people, including Austin.
You can join this by visiting Facebook and searching for the group 'Austin needs a bone marrow donor.' There are already 1,302 members.
Not only will this help to spread the word, it helps to lift Austin's spirits to know that so many people really care about him.
But most importantly, Austin hopes everyone who reads this article will visit www.bloodservices.ca to learn how to donate blood, or become a bone marrow donor. Having a bone marrow transplant can cure Austin and allow him to live the normal life he so desperately wants to.
With a ninth birthday around the corner on October 27, it would be the best birthday present ever. |
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