Maddie's Wheelchair Van

Maddie was born with Pfeiffer Syndrome in October 2005.

She had a life expectancy of fewer than 5 years and here we are in year 17. There are 3 different types of Pfeiffer Syndrome and she has Type 2/ Type 3, which is the most severe case. It is a rare genetic disorder that prevents further growth of the skull. It affects the shape of the head, face, and skull, but with Madison, it also affects her elbows, back, hands and feet.

This syndrome affects all aspects of her life. It takes away her ability to have purposeful use of her hands (her elbows and knees are fused), and her back. As she got older the development of the three S's started getting worse with scoliosis being the most severe. This also caused her to get a tracheotomy for her airway to help her breathe.

She has various limitations and as she has gotten older they have progressed over the years but it does not stop her from trying to live her best life. To date, Madison has had numerous surgeries with her most recent being a mid-face advancement and prepping for rod repositioning in a few weeks.

Despite having gone through more in her 17 years than most have in a lifetime she always has a smile on her face with a great sense of humor.

After your gift to Maddie, you can also make a contribution to the Liberty Memes Foundation Wheelchair Van fund, here.