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  Coleman "Cole" was born 6/20/96 and believed a completely normal child.  At 10mnths of age he stopped using his legs and his hands started to tremble.  He was diagnosed to have a genetically inherited disease called "spinal muscular atrophy" (SMA).  SMA attacks the nervous system and slowly causes weakness and loss of muscle strength until lack of breathing & swallowing strength causes death.  It is the #1 genetic killer of children under 2 yrs of age.  Cole has a type II level and it is hoped that he can live into his early teens.  This disease is very similar to a well known adult disease called "Lou Garigs"  or ALS, only SMA attacks young children.  Unfortunately, even though it affect just as many children as ALS does adults, it's still a relatively unknown disease.  Why?  because the children don't live long enough to become famous in society as the adults with ALS.
 
     Cole is now 4 yrs old;  He has lost complete movement of his legs, can barely get his hands to his mouth, has difficulty sitting up, holding his head up and needs assistance breathing at night.  Unlike spinal chord injuries, Cole has his complete feeling and has sensory input with his entire body (he can feel normally).  Most important, Cole's disease (SMA) does not effect the brain and he is cognitively a normal child!  Well almost;  Col started talking at age 5 months.  At 2yrs old, he was tested to have the vocabulary skills of a 6yr old.  At 3yrs old he was estimated to have an IQ between 160-180.  Cole is an extremely intelligent.  
 
     With Cole's intelligence and still having some movement in his hands, Cole was trained at 16 months of age in how to operate a computerized electric wheel chair!  It is believed that he is the youngest child (in at least S. California) to learn to drive a "power chair".  After a 1 year struggle, armed with a video tape of Cole maneuvering a "trainer chair" through an obstacle course and pages of signed recommendations from his therapists;  Cole was finally able to fight through the insurance denials (insurance said walking at his age was a convenience) and get help with the purchase of his very own electric power chair.  Cole was no longer in a permanent "time out"; with-out being able to move.  Cole now has his mobility and is able to move about any where his chair and parents can take him.  Unfortunately Cole needs a van with a wheel chair lift in order for him to leave his house with his chair.  Presently his chair is carried in a '87 SUV with over 200,000 miles and an aluminum ramp to steep for his mom to push him up and too short for his head to fit under the door.  Cole's medical expenses for 1999 were $100,000 (est.), medical equipment cost was well over $50,000!  The charities like the MDA donates $1700 every other year towards a wheelchair (his chair alone was over $16,000.) & no state or charities help with vans or lifts.  For Cole to qualify for "disability SSI" his parents total income can not be over (approx.) $22,000. per year.  It's a middle class catch 22, one either needs to be in poverty, or wealthy to provide for a disabled child.
  
     On a personal note, Cole loves anything that has to do with outer space, he studies the planets, galaxy, astronauts, and is a Star Wars fanatic!  He loves going to the movies and playing on his dads computer.  He is accomplished at Nintendo games like "Star Wars pod racer".  Cole wants to be either a Jedi Knight, an astronaut, a pilot, engineer, or a doctor when he grows up.  His night time book request are frequently astronomer and biology books.  He has his very own microscope and telescope to explorer the worlds when he is out of his wheel chair.  When he is in his chair, he zips around his house and back yard like it is his very own pod racer.  But more than anything else, Cole LOVES to talk, and talk, and talk.  He absolutely loves people and brings a smile to every ones heart that he has every met.
      On a positive note, with the rapid progress in medical genetics, the gene has been discovered for SMA and also what it does and how it does it.  It has been announced at an international medical conference attended by every major SMA research investigator in the world that there is very real hope that there will be a drug to stop SMA in children with in 24-36 months and perhaps bring back some strength for the children already afflicted.  There is very real hope that Cole may be part of the 1st generation of children to have a treatment for this now incurable disease.  There is hope!

spinal muscular atrophy promotion

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spinal muscular atrophy promotion