Keep Ian Mobile!

Please Help Us To Keep Ian Mobile...
Our son Ian is in desperate need of a new wheelchair vehicle. Please help us to keep him mobile!  This is the second year we've started this campaign and we're hoping to get a little closer to our goal, as winter is coming and the van is not going to make it!


The love of our lives...
Our son Ian was born with a degenerative brain disorder in 1999.  His first few months were seemingly normal except for the lack of a social smile.  He had learned basic sign language (it's really cool to see how even young babies can learn to sign), was almost able to sit on his own and really enjoyed getting to know his surroundings (usually careening around corners backwards in the kiddie cart in grandma's kitchen).  

Right around the time we started him on solid foods (unfortunately at the same time he learned to sign "more", "please" and "graham crackers"), he started getting sick quite often.  What we came to find out was that the lack of a social smile was due to a lack of muscle control caused by damage to his basal ganglia (the area of the brain responsible for many motor movements). This section of the brain also controls the nearly 50 pairs of muscles and nerves that control swallowing and in Ian's case, this lack of control was causing him to aspirate his food during every feeding.  We began to feed him through a tube placed into his stomach through his nose, but he continued to get sick, losing more motor skills, the ability to hold himself upright, etc.


We spent years in and out of hospitals trying to determine the cause of his disorder and after several surgeries to help improve his quality of life (feeding tube with nissen fundoplication and a tracheotomy), the shrinking of his basal ganglia started to slow and then seemed to stop altogether.  While Ian is healthier, he's never moved much beyond a baby in terms of his physical capabilities.

Ian is unable to walk, speak and only communicates through his beautiful brown eyes. (and we could listen for hours :-).  He also laughs at certain TV shows like this episode of SpongeBob (see below - it takes a minute to hear the laugh, but it's worth it!).

The tracheotomy made a huge improvement in his health but one downside is that he's is constantly in need of suctioning to keep his trachea clear.  We purchased a rear-access wheelchair van 12 years ago to be able to transport Ian to doctor visits, hospitals, etc.
The van has been a constant source of problems.  A lot of modified vans were never designed to hold the added weight of the modifications (ramp, hydraulics, passengers and all of the "stuff" you need to care for a disabled person).

We've blown the motor in the van, replaced the tires 4x (less than 65k miles on the vehicle), gone through 6 sets of brakes and rotors and are on the 5th exhaust system.  We've gotten to the point where it's costing too much to maintain it and there is always something wrong with it...


Why we need your help?
Between medical expenses, nursing costs and equipment needs - we're struggling. We've managed to save up about $29,000 for a vehicle but the cost of a new vehicle capable of handling our winters, and which allows him to ride up front where he can be tended to is over $75,000.00!  We simply can't afford it and we need help.

Any assistance you're able to offer will go into a special trust fund setup for Ian. We're not sure if we'll reach our goal this round or even over the next several years.  We don't really have a lot of options.  The old van is on its last leg and as Ian gets older, it's really important to us to make him feel as "normal" as possible.  He smiles, makes an attempt to sing (that's what it looks like to us) and can speak volumes with those eyes.  We like to take him camping every year (click the gallery link to see photos), go to visit his grandmother and include him in everything we do.  In order to continue, we need to keep him mobile!  If by some chance we surpass our goal, the money will be used to cover other improvements to Ian's daily life (we need to tackle a bathroom with a lift as one of our next projects).

The Impact
Your contribution will help to ensure Ian's mobility while also having a huge impact on the safety of our family. Currently, we have to stop constantly to go around to the back of the vehicle to care for Ian.  He needs to be suctioned every few minutes and it's dangerous to have to constantly jump out of the van to care for him.  The vehicle we're hoping to purchase is a truck which will allow Ian to sit up front.  This will allow us to simply pull over to suction him and deal with any other urgent medical issues. 

Most importantly, Ian can travel with the rest of the family, go to the park, attend his boy scout events (like the "Fish-O-Ree"), go camping and participate in normal day to day activities.  He hates to be stuck in the house and loves normal things like going to school with his friends.  

Other Ways You Can Help
We know many people won't be able to contribute, but that doesn't mean they can’t help:

 - Visit your local Benevolent and Protective Order of Elks and see if they need volunteers for the many things they do for kids with disabilities, veterans and others (http://www.elks.org).

- See if there are any local families with disabled kids. Many times, the parents can't get out for even a simple "date" night for months or even years. Offering to help out (babysitting for example) could have a huge impact on their lives.

- Don't be afraid of kids with disabilities.  Treat them like other kids.  Say hi, ask questions...