When our first child, Victoria, was born, she was a very happy and mellow child. She didn't cry; she was a great sleeper. In the first few checkups, the pediatrician told us that she was hypotonic, which means that she had low muscle tone, but there was nothing to be concerned about and most children born with this condition, eventually grow out of it.

As first time parents, we were relieved, and considered ourselves to be among the fortunate parents to be getting a good night's sleep and waking up to a happy and loving child.  However, at her 4-month checkup with a new pediatrician, serious concerns were brought to our attention about Victoria's development. Among other things, she was not able to hold her head up while on her belly or raise her arms above her head.  She also still appeared to be very "floppy".

We soon found ourselves face to face with a neurologist who told us that Victoria had Spinal Muscular Atrophy, a motor neuron disease, which can progress very rapidly with early childhood death, usually by the age of two.

We were devastated, and not quite ready to accept this diagnosis. In our hearts, we just knew it was too early to make such final determinations about Victoria's life. The love and support we received from the therapists and nursing staff at the P.G. Chambers School along with family and friends encouraged us to seek another opinion from the "grandfather of neurology".

As a result, Victoria was rediagnosed with Congenital Muscular Dystrophy, which is usually much more slowly progressive. Although there is no known cure, we were told she can get stronger over time, and she has, thanks to intensive therapy services from P.G. Chambers School.

Victoria's diagnosis was confirmed by doing a muscle biopsy when she was 2 1/2 years old, and while we were pregnant with our second child.  On one hand, the rediagnosis was very good!  Victoria would live and there was hope for her future!  On the other hand, because it is a genetically inherited disease, we were now faced with a 25 percent chance that our second child would also be diagnosed with Congenital Muscular Dystrophy.

Matthew is our second child and, although the odds were in our favor, he too has Congenital Muscular Dystrophy. Both our children receive intensive therapy services from P.G. Chambers School and Victoria is enrolled in P.G. Chambers School's Preschool Program. The progress they've made is amazing and much of that is due to the individual attention, the quality of care, and the creativeness of the therapists and teaching staff.

For example, Martha, Victoria's physical therapist for the past 4 years, designed a unique insert for her highchair. She was happy to invest the time to create something that would work specifically for Victoria and that would save us hundreds of dollars. Our occupational therapist, Karen, recommended a special listening program for Victoria, which has opened up a completely new world for her. As parents, we are absolutely thrilled and grateful!

A really defining moment for us was when Victoria began driving her power wheel chair.  For the first time, she and she alone was in control of her mobility, and in time, she made the same connection with her mind! She now has a tendency to drive where and when she is not supposed to and to say "no" a lot more, but she is exercising her independence and we couldn't be more proud.

The other day, Victoria asked us, "Can I walk?"  It wasn't that she was asking us if she had the ability to walk, she was letting us know that she had the desire to walk.  We know how motivated she is. She has already exceeded all our expectations. Who are we to tell her that she can't do anything she wants to do?  We stopped what we were doing at that moment, held her upright, and guided her while she tried to take her first steps.  Now she wants to practice walking all the time.

Victoria is now 4 1/2 years old and the progress she has made is phenomenal.  She can hold a pencil, feed herself, work a computer better than most adults, push herself down a slide on her elbows with assistance, and she is getting stronger every day.  Matthew is 2 years old and fearless.  He is also receiving home-based early intervention services and we hope he will also be able to attend P.G. Chambers School's Preschool Program next year.

P.G. Chambers School is a place where every teacher and administrator knows every child's name.  It's a place that celebrates every accomplishment, where every child is accepted and cherished regardless of their disability.  And, there are so many children with so many needs.

We'd like to share our family motto, the words we live by...

Life is about choices, and being happy is a choice.
And, when you wake up every day, you can choose to be happy,
or not to be happy regardless of your circumstance.
And every day, we choose to be happy.

Very Truly Yours,

Anabela, Kirk, Victoria and Matthew Rossi