Our Story

We were so happy to have our healthy baby girl. Finally! Allison was perfect. She had the bluest eyes and darkest hair you've ever seen. When wrapped up tight in her blanket, we called her our "Little Papoose" because she looked like a little Indian baby. We were so thrilled that weeks and months were passing by and Allison seemed perfect at each check-up, hitting each developmental milestone. We even commented on how strong she was when she stood on our lap and held her head up at such a young age.

By early 2006, Allison hadn't been hitting her milestones for quite some time. She seemed to roll around on the floor when we put her there, but there wasn't any pulling up to a stand or “cruising” along the sofa. She didn't even seem to have a huge interest in exploring and checking out all the nooks and crannies that most 2-year-olds are so interested in. By March our pediatrician encouraged us to put Allison in Physical Therapy. We thought she might just be a little off track and this would kick things into gear. Three months later, Allison was showing very little increase in muscle development.

By June, Allison's physical therapist, Barbara had known enough to know that things weren't developing like they should. Barbara knew of a genetic blood test that could be done to test for a specific disorder, Spinal Muscular Atrophy. Barbara contacted our pediatrician to order the blood work. When I took the blood paperwork to the hospital, I memorized the genes they would be testing and decided to do a little investigating on my own. The internet can be a dangerous thing to a Mom with a sick child! Of course lots of different diseases came up and I questioned if she thought this was Muscular Dystrophy. I've found out that doctors are very wary to tell a patient or parent ANYTHING until test results are in. We also deducted that they would be testing for Spinal Muscular Atrophy.

I think looking back, I was convinced that Allison would walk even with her developmental delays, until one specific day at physical therapy when I was talking with Barbara. We were discussing Allison as we worked on her strengthening exercises. I remember saying to Barbara, " …and she'll walk, right? It's just a matter of when?" When Barbara couldn't (and wouldn't) give me a "yes"., but rather a “we're trying" or "we'll see”…I knew. I knew then that this was a whole other game now.

We got Allison's test results on a Saturday morning. After waiting three weeks for a lab in Boston to send us the results, our pediatrician called. She asked if we wanted to come in on Monday and talk in person. After waiting this long, we weren't going to make it another couple of days. I remember standing in our bedroom while Michael and I listened on speakerphone. She told us the results had come back positive for Spinal Muscular Atrophy (SMA). It's almost as if we knew. We had suspected SMA from doing a little bit of research. Of course our family had done a lot more research on SMA as we waited those three weeks for a result. I took one look at an SMA website, cried my eyes out and never looked again. All we knew was that Allison was going to be in a wheelchair. I thought, “No big deal! We see kids in wheelchairs all the time!” No problem, I thought! Until we did the research ourselves.

It took Michael and me a good year to accept all of this and make it a way of life. We each, individually had to go through our grieving process. We grieved for all the things we had hoped for and had wanted for our daughter and family. We grieved for a life that we would never have. But during this year, we also discovered a new life. Since we have a clean slate in front of us, we're trying to keep an open mind and accept things as they come. We know about SMA now and have worked hard to educate ourselves and those around us. We work hard to keep Allison healthy, now that we know all of the secondary health problems associated with SMA.

Allison constantly amazes us. Our pediatrician told us the day she was diagnosed, July 22, 2006, “Allison will be smarter than you or I will ever be. She'll do things that will floor you.” Dr. Patranella was right. Allison is a beautiful, blond haired, blue-eyed little girl who is so incredibly smart and precocious. She amazes Michael and me daily and makes us laugh all the time. We are so thankful that we have Allison in our lives. She lights up a room and won't let you get away without warming your heart in some way.

Katie Kerns, Allison's mom