ABOUT AIDAN - Diagnosis to 2009

Aidan and the Doctors

All experts agree that keeping DMD boys' muscles as strong as possible for as long as possible is extremely important. For if a cure should be found, it would not be able to regenerate wasted muscles, but only work on muscles currently strong.

To this end, Aidan is now taking many vitamins and supplements, but is also on steroids. This necessitates carefully constructed low-sodium, calorie-specific meals to maximize the effect of these medicines and to minimize the side effects of the steroids.

He's just recently learned to swallow pills, so the daily medicine routine is much easier.

Through the Parent Project Muscular Dystrophy President, Pat Furlong, Mindy and Mitch were introduced to Dr. Brenda Wong, Associate Professor of Pediatrics and Neurology, at Cincinnati Children's Hospital. Dr. Wong is a very empathetic and research-savvy child neurologist. Aidan sees her as his primary care physician in Cincinnati every six months.

2008-9 Cincinnati Update
While some tests in 2008 showed DMD effects (osteoporosis, for example), the 2009 tests indicated that Aidan's condition had not deteriorated from the 2008 tests.

2007 Cincinnati Update
During Aidan's regular checkups with Dr. Wong, his growth, muscle strength, organ strength, and overall health are checked and baselined. Results from all these tests, given in early August, were excellent.

Side effects from the taking of steroids include poor vertical growth and excessive weight growth. Aidan's recent tests showed that he'd grown an inch in the month preceding the test, but had only gained one pound. Mindy and Mitch monitor his diet carefully, avoiding almost all processed foods (too much salt), junk food, and sweets. This careful monitoring has paid off for Aidan's health.

Aidan, bravely with hand-holding from Mitch, endured a forty-five minute MRI which provided a baseline to see the ratio of fatty tissue to muscle tissue. (With DMD, as muscles deteriorate, they're replaced with fatty tissue, lessening muscle effectiveness.)

Even knowing that the long-term prognosis for DMD is grim unless a cure is found, it's very comforting to know that Aidan's current health is excellent.

Note: If you see Mindy and Mitch, ask them about the hotel, the bed bugs, and Sarah Jessica Parker.

Mindy & Mitch's Original Letter
Following is the letter from Mindy and Mitch that was posted when the site was launched.

Dear Friends and Family,
In the Spring of 2006, Aidan was diagnosed with Duchenne Muscular Dystrophy. DMD boys gradually lose the use of their muscles, eventually becoming paralyzed. Most do not live past their early 20's.

This diagnosis has been devastating for our family, but it is the support of friends and family that has kept us going. If there is a blessing here, it is in the number of people who have reached out to us as we've struggled.

We would like this website to enable friends and family to stay informed and involved. We'll add regular updates about how Aidan is doing as well and about progress being made in DMD research. Hopefully, Aidan will eventually contribute to the site himself.

Many people have asked us how they can help. It's difficult to come out and ask for help or admit that we need it, especially when Aidan’s significant needs are a few years in the future. But we do know that we won't be able to do this alone.

Thank you all for your concern for our family.

Sincerely,
Mitch and Mindy Leffler