Our Story…

Hi. I live in the northeast with my family of six. Our youngest child and only son MJ is 14-years-old and has autism.

Our son and family is facing what may be the hardest physical and emotional challenge we've ever had to deal with. During an annual exam in June 2006, we learned MJ has developed a condition of the spine called scoliosis.

Scoliosis is an abnormal curvature of the spine. Instead of going from top to bottom in a relatively straight line, a spine with scoliosis may appear to have a side-to-side “S-shaped” or “C-shaped” curve. Mild degrees of scoliosis won’t cause you any problems. However, more severe cases of scoliosis can result in pain, weakness, and low self-esteem because of obvious cosmetic deformity. Very severe scoliosis may cause heart and lung problems if those organs are overly cramped in an abnormally shaped chest cavity. Source: Scoliosis by Rosalyn Carson-DeWitt, MD

We took MJ to Helen Hayes Hospital for a consulation. A pediatric orthopaedic physician who came in to treat patients each month told us after an exam and x-ray, that he had a 24 degree curve. In six months we were to bring him back for a follow-up visit. Another "wait and see" approach…

Six months later we are surprised and disappointed to find the scoliosis has rapidly progressed from 24 to 48 degrees. The curve is now causing MJ discomfort. He often leans to one side, has more unbalanced coordination, and it's quite noticeable without bending over.

A second opinion from a reputable doctor at a reputable hospital, recommends MJ have spinal surgery to prevent further progression of the scoliosis. This major surgery is scheduled to happen in June 2007.

The Good, the Bad, and the Ugly…

I'll be sharing my thoughts and experiences leading up to the day of scoliosis surgery throughout MJ's recovery period. The good, the bad, and the ugly.

There are so many things I'm worried about… How will MJ take the news of his upcoming surgery, how much pain will he be in, what will it be like to see him in an Intensive Care Unit, how will autism affect his recovery, what will it be like to have a visiting nurse, teacher and therapists inside our home everyday… to name a few.

I'm also worried about any potential risk for disparities in my son's health care, and realize how hard it can be for families to get services, and put a support system into place in a short time.