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Jake Junction
How is Jake doing now?
As of August 2010, Jake is a very energetic 6 year old boy with wandering
hands and curious eyes. His developmental ability currently scores
as a 12 month old. Jake is now learning to bring himself to the
sitting position. He is able to maintain sitting anywhere from 10
seconds to 10 minutes, but you must be there in case he falls. He
is now starting to get on all fours and is learning to crawl. He can scoot on his
back all the way to your house. He's able to hold his own sippy cup now. He isn't able to form words, but
does babble a lot and loudly. Our neighbors say they enjoy hearing
what a happy boy he is. Jake attends Pre-K @ Nina Harris School,
an Exceptional Student Education center.
Why does Jake need your help?
His mother and I work hard to make sure we have health insurance
and can afford what Jake needs to reach his fullest potential. We
have spent the last 4 years taking him to Physical, Occupational
and Speech therapy at All Children's Hospital and Lampert's Therapy Center. Jake also attends
the Pinellas Lighthouse for the Blind (the Watson Center) for Vision
therapy. However, we are not satisfied that we are doing enough
for Jake.
New Therapies
Therasuit is a new and very intense therapy that is creating significant
advances in children. It was initially created for astronauts whose
muscles were debilitated by months in zero gravity. The Therasuit
Method is an intense therapy protocol used for children with neurological
disorders. The protocol utilizes specialized equipment and techniques
to help children gain strength and endurance needed for movement.
Some of the benefits of this therapy include retraining the Central
Nervous System, normalizing muscle tone, correcting gait patterns,
improving balance, increasing strength, and improving bone density.
Our insurance
company will not cover the cost as it is considered "elective".
The cost for the 3 week program is $4,500. We've toured the facility
and we've already met with parents who have provided this for their
children and they report amazing results. Over 50% of children who
participate in Therasuit advance to the next stage in their ability,
whether it is crawling, standing or walking. We'll accept no less
for Jake.
Medical Bills
Jake doesn't weigh what the doctors say he should and would like
him to have a feeding tube put in his stomach, even though nobody
knows what a CMD patient should weigh. To combat this, in addition
to many stressful feedings, we give Jake lots of nutritional supplements
such as Pediasure and Boost, which cost about $11/6-pack. We also
give him Benecalorie to pack on extra calories @ $35/case that you
can only order by mail. This equates to about $200/month.
Jake has Gerd, better known as Reflux and
takes Prevacid for this. Jake will always be susceptible to some
form of Epilepsy and must remain on anti-convulsants. Even with
insurance, these medications cost $100/month. Meanwhile, we are
still paying for the anti-convulsant he used to take for 2 years,
Vigabatrin, because the medication was not FDA Approved, our insurance
would not cover the cost. It was the only one that worked and cost
$250/month, which he took for 2 years. We paid for this via credit
cards as a lack of money was not going to stop us from helping Jake.
We haven't even mentioned the Copays for
Doctor and Therapy visits, Wheelchairs, Adaptive toys and padded
play areas.
This is another reason Jake
needs your help!
What have you done so far?
You've donated $4,500 to cover the cost of the Intensive Therasuit 3 week program.
You've donated $125 to cover the cost of the deductible for Jake to go to Physical and Occupational Therapy twice per week at Lampert's Therapy Center.
You've donated all of the proceeds from Jake's first fundraiser, over $2,400, towards building Jake a Therapy Room at home. The remaining costs were covered by donations from JakeJunction.com and Jake's savings account.
You've donated $700 from Jake's 6 year old birthday party fundraiser for Cure CMD.
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