Chasing MDA

Yu Shing Ting
By .(JavaScript must be enabled to view this email address)
Friday - July 02, 2005
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Neil Kalani (middle) with brother Jeff and father Ken

Join the Jamba Juice 5K Banana Man Chase on July 9 and help support the Muscular Dystrophy Association of Hawaii and its 497 clients, including 18- year-old Neil Kalani.

At age 3, Neil was diagnosed with Duchenne’s muscular dystrophy. Today, a 2004 Mililani High graduate and student at Leeward Community College studying digital media, Kalani sits in a wheelchair knowing that most people with Duchenne’s do not live past their early 20s.

It hasn’t been easy for the Kalani family, but they’re not alone. With the help of the MDA, they’ve made hundreds of friends who can relate to their challenges.

As a baby, Neil seemed to be normal except that he would walk on his toes, fall down a lot, and had really large calf muscles, recalls mom Carol. Then the doctor noticed the calves and requested a blood test.

“The test was to measure the CPK (creatine phosphokinase) levels in his blood,” explains Carol. “When those tests came back it was at an elevated level compared to what it should be, and he referred us to a neurologist. From there they determined that he had muscular dystrophy.

“Neil could walk until he was about 10 years old. Now it’s to the point where he can’t transfer in or out of the wheelchair by himself. He’s able to eat on his own, but he has to kind of bend his face down low to the plate because he can’t lift his hand up. He can type on the keyboard, and he loves doing things on the computer. But he can’t comb his hair, lift his arm above his shoulder, get dressed by himself. It’s a very hard diagnosis for the family and for the child.

“You kind of learn how to live with it. It wasn’t like it happened overnight where one day he could walk and the next day he couldn’t. This was a gradual thing, and he knew what was going to happen. At a very young age we explained it to him. He would ask us questions, and it got to the point where he asked us questions that we couldn’t avoid anymore. Like when he was 7, he asked ‘Am I going to be in a wheelchair?’ Then when he was about 8, he asked us ‘Am I going to die?’ That was a really tough one. As he got older and he saw that his friends were passing away, rather than try and avoid it or lie to him, we had to tell him the truth. So, he knew from the time he was 10 or 11 that he had a limited number of years left to him.”

Muscular dystrophy is an umbrella term for 43 different neuromuscular diseases. The MDA of Hawaii is a voluntary health agency with their youngest client at 2 years old and their oldest at 89.

“It’s a disease in the muscle where children or adults have defective genes and their muscles are unable to gain strength, so the deterioration is atrophy,” explains Audrey Taniguchi, district director for MDA.

“It’s a physical disability, not a mental. A majority of the cases are hereditary, so it’s not something they can catch or foresee. It is something they’re born with. And there’s no cure or treatment. The money we raise, a portion goes to research, and majority goes toward programs and services that make life a little manageable.”

Some of the services that the MDA provides include the purchase and repair of wheelchairs and leg braces, the purchase of communication devices, funding for support groups, monthly clinics where clients can meet with a neurologist, and assistance with some multi-disciplinary care.

“We feel very fortunate to be a part of the MDA,” says Carol. “I can’t imagine what our life would be like without it. Emotionally, financially and medically, they’ve been very supportive. They helped us with getting a wheelchair, which is very expensive. A manual wheelchair costs about $1,400, and then when Neil started intermediate school we had to get him a powered chair, and that was about $2,500.

“There’s also the social interaction with the other clients, the support groups and these other activities. They also provide medical checkups, and he goes to the annual camp. From Neil’s standpoint, he would probably say camp is the best thing. He knows that if the MDA wasn’t there we would still get him a wheelchair somehow, but that camp is the best thing for our child because he gets to be away from Mom and Dad. They get treated royally and it’s just so much fun. They’re in an environment where they feel comfortable all the time because everyone else is in the same predicament. Not all are wheelchair-bound, but they all have some form of muscular dystrophy.”

Here’s a chance to help Neil and the MDA by taking part in the fifth annual Jamba Juice 5K (3.1 miles) Banana Man Chase on July 9 at Ala Moana Park.

One hundred percent of the money raised will go to support the Muscular Dystrophy Association of Hawaii.

The race starts at 7 a.m., and the first three male and first three female, as well as the top male and top female in their age group to cross the finish line will win an entire year of Jamba Juice.

About 800 runners and walkers are expected to enter. There’s a $25 entry fee which includes a T-shirt, and then participants are encouraged to raise pledges or donations. “Since the event began in 2001, Jamba Juice has helped raise more than $92,000 for MDA Hawaii,” says Jill Wheatman, community relations and marketing manager for Jamba Juice. “Our goal this year is to raise $30,000 for MDA.”

There also will be music, games, a Balloon Monsoon, and Kaulana the magician. To enter, stop by packet pickup at Jamba Ward Village between 4 and 7 p.m. Friday, July 1; or between 10 a.m. and 2 p.m. Saturday, July 2. You can also sign up on race morning starting at 6 a.m. For more information, call 593-4454.

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