New Horizons for Levi

First, thank you for your time in reading this. This means a lot and was difficult to do.

Our oldest son Levi, now 10 years old, was born with Ullrich Congential Muscular Dystrophy (UCMD). UCMD is a rare congenital disease with a prevalence of approximately 1.3 per million. Currently there is no cure or treatment. Due to the low prevalence there is very little funding available for research. It is a progressive disease and those afflicted eventually lose the ability to walk and perform many tasks you and I take for granted. Levi has never been able to walk on his own and now that he is getting older his mobility has greatly diminished. A wheelchair has now become his primary form of transportation.

The funds from this campaign will go towards the purchase of a special wheelchair (Action Trackchair) that would allow Levi to participate in many more outside activities.

The Action Trackchair is a mechanized wheelchair that runs on rubber tracks which are far more capable than the standard wheels typically seen on a wheelchair. A tracked wheelchair would allow Levi to explore sand, rocky terrain, gravel, attend his siblings soccer games, explore the backyard and even tag along for mild hikes and campouts. Another world of opportunity awaits with this technology. Too often my wife and I find ourselves asking “What will we do with Levi?” when invited to an activity. The Action Trackchair will drastically reduce the frequency of that occurrence. The chair can be altered to “grow” with Levi. He will be able to use it for 10-15 years.

Levi loves to play. He loves to drive his current wheelchair (you should see him!). He is very good with his hands despite having limited use of them. While we realize this chair is not necessary for sustaining life, it would add a significant amount of quality to his life as he would be able to go places he (or his parents for that matter) never thought possible.

Levi has a younger brother (Wade) and a younger sister (Emily) who both love to play outside and explore. Levi’s ability to join Wade and Emily is quite limited with his current, conventional wheelchair. Levi always lights up with a smile when he is able to participate in the fun.

The expenses are many, mainly in the form of time and money, that are involved in raising a special needs child. Physical, occupational, and speech therapy on a weekly basis for the duration of life. The cost of wheelchairs, assistive devices, wheelchair accessible vehicles, home renovations, the list goes on. Unfortunately it is a constant back and forth battle with insurance to try and obtain some, if any, coverage. Sadly, the truth is most items do not qualify. This is one of them.

Regardless of your decision to donate or not, thank you for reading about Levi and becoming a little more informed about those with special needs. It is first and foremost an honor and a privilege to raise such a child. We would be lying, however, if we didn’t say it also comes with seemingly insurmountable physical, emotional, and financial challenges on a very consistent basis.

If you donate, thank you so much! Levi will be so excited and he will get great use from the Action Trackchair for many years to come. Every time he uses the chair we will remind him where it came from.

Again, thank you.