Our fourth and youngest child, Patrick, was born in January of 1987. He was normal and healthy and reached milestones at all the right times.  It wasn't until he went to kindergarten, at age 5, that we began to see little things that were worrisome. 

He suddenly couldn't use scissors, couldn't put on his shoes, or find his way back to the classroom from the library. Patrick underwent months of testing, but nothing significant could be found.

I finally called the doctor and begged her to do a CT scan. I told her I just had a feeling something major was going on. Maybe it was because she was also a mother, but she ordered the test. The rest, as they say, is history. It was immediately obvious that a major disease process was present in Pat's brain. 

In March of 1993, at six years old, we were told he had MLD. Because his symptoms were very mild at this point, and because his sister was a perfect match for bone marrow transplant, Pat began a transplant during the first week in May 1993. The transplant was an emotional and difficult experience, but Patrick did very well. Over the next nine
months the new marrow engrafted and he began to make the missing enzyme.

Unfortunately, Pat also became more symptomatic for MLD. He began to lose his balance, his speech was affected, and he had trouble with
memory and concentration. Patrick is now sixteen years old. The symptoms of MLD appear to be stable. The bad news is that he has no meaningful use of his arms and legs and he has never been able to get the hang of reading (I'm a librarian, imagine my chagrin.) 

The good news...Patrick is excited to go to school each day, he finds true enjoyment in talking about Power Rangers and cake with pink frosting, and he smiles each morning when we get him up. And, as for the reading, he listens to his books on tape. (He just finished Harry Potter #5 for the second time.)

When my kids were little I remember them once asking about the "short" bus that came to school, and I explained to them about the "special" kids who rode that bus and why. I'll never forget the day that Patrick looked up at me and out of the blue asked, "Mommy, am I special now?"

Yes Patrick, you are special , and so are all the MLD kids and their families. I pray that someday soon there will be a treatment for this terrible disease.

Mary Osmar