This is the story that Maree wrote for the Very Special Kids Newsletter in December 2004.
Our story begins on a Wednesday afternoon, the 27th of February 2002, when we were told the devastating news that would change our lives forever: ‘Your son has a severe genetic condition that affects the cells in the spinal cord and limits voluntary muscles. It’s called Spinal Muscular Atrophy (SMA). He will never walk and will have respiratory problems. His life expectancy is childhood.’ I must have gone over those words a million times in my mind. How could this happen? My husband and I were fit and healthy, and our first son was the picture of health. There were no genetic conditions on either side of the family. There must have been a mistake, but deep down I knew they were right. Jackson had showed no signs of weight bearing when he was a baby.
He never rolled over by himself or sat up from a laying-down position – all the signs that things weren’t right.
It was nearly a year since Jackson was diagnosed that I had the courage to pick up the phone and call Very Special Kids. I had heard through another mother whose son has SMA as well as to what a great organisation it was. But every time I went to pick up the phone the tears would start flowing and the words never came out. The day I did call my first contact was a Family Support Team Member who has been our greatest support to date. Last year we went through a tough time with Jackson in regards to his health. What started out as a common cold ended up with a collapsed lung on life support. We ended up in the Royal Children’s Hospital in the intensive care unit for six weeks with numerous hospital admissions between June and September. I happened to be very pregnant with my third child and with our other son to look after it was really tough. One of us always had to be with Jackson in hospital, and as days turned into weeks, it was great to have the support of our Family Support Team Member with visits and phone calls – just little things like that mean the most. The good news to date is Jackson has not had a hospital admission at all this year (fingers crossed). Towards the end of last year, our Family Support Team Member mentioned to me about having a volunteer come out to our home to spend one-on-one time with Jackson. In theory it sounded like a great idea, but deep down I was very protective of him, and I had a few doubts. I had always imagined the volunteer to be an older lady, sort of like a grandmother figure, so when our Family Support Team Member said that she had a younger lady I was a little hesitant. She arranged for us to meet, and as soon as I opened my front door any fears and doubts I had just disappeared. The moment Jackson and Jakki met it was love at first sight, and since then they have both been inseparable. They both get so much out of spending time with each other – it brings tears to my eyes to watch them together. Jakki will come and visit at least once a week and comes with us to doctors and specialist appointments and has now become a much-loved part of our family. Words could never explain how thankful I am to Very Special Kids for introducing Jakki into Jackson’s life.
Even though life has taken us down a different path to what I thought it would, the road we have gone down has led us to meet some wonderful people and to be involved in such a valuable organisation as Very Special Kids. Just knowing that someone is there in good times and bad, to give physical and emotional support is priceless. From the bottom of our hearts I would like to thank the staff
and the community for their support and for making Very Special Kids a very special place.