My first son Isaac was born on 21st October 2009. Both Jay and myself were overwhelmed by the love we felt for our perfect little boy who instantly became our world. We were your average first time parents learning day by day and enjoying every moment. It wasn't until Isaac had his 6 week check with the health visitor that anything out of the ordinary was picked up. I was advised to take him to the doctors due to 'poor muscle tone' which I did and was advised to take Isaac to hospital if I felt it necessary. We obviously listened to the advice and took him to hospital where he was admitted and the hospital staff immediately began running tests. The next morning our world as we knew it changed forever. We were told the devastating news that the Consultant suspected Isaac had SMA type 1 and, due to the severity of the condition, it was unlikely he would live to see his first birthday. On hearing this news our hearts broke in two. I sobbed uncontrollably and felt instantly numb inside.
The following day we returned home, only for Isaac to be admitted again a few days later with bronchiolitis. Unfortunately Isaac had to be intubated and transferred to Addenbrookes Hospital. Against all the odds and total disbelief of the medical staff Isaac was discharged on Christmas Eve and, as a family, we went to the local children's hospice for end of life care. Again Isaac refused to give up and after spending a week in the hospice learning how to care for Isaac we all went home on New Year’s Eve. We were able to spend the most precious few months at home with our beautiful boy before he passed away on the 12th March 2010. SMA is so cruel. It took away our chance to watch Isaac grow and enjoy a lifetime of happiness and experiences.Throughout all of his short life Isaac continued to smile and provide us with precious happy memories that we can treasure forever.
We have been extremely fortunate to be able to have a second little boy, Theo, who does not have SMA Type 1. Theo is aware of Isaac and we will continue to make sure Isaac is always an important part of our family life.
SMA Support UK is an invaluable resource for those who are affected by SMA in any way, regardless of the type and severity. For us they provided information to allow us to understand the condition and supported us in the most difficult time of our lives. One of the Outreach Workers came by train to meet the three of us. She sat and listened to our concerns and gave us tips and suggestions on how to care for Isaac as his muscles became weaker and his breathing became more laboured. This advice was gathered from other families who had been in the same position and was first hand experience, which was invaluable. SMA Support UK also sent us a box of sensory toys to enjoy with Isaac. Isaac loved the 'Space paper' and anything that lit up and made a noise.
Recently three friends and I decided to hold a family fun day in order to raise funds for SMA Support UK. A Village Affair was so much fun to organise and the local community really supported us on the day. We wrote hundreds of letters to local and national companies asking for help with prizes and the response was fantastic. We also had food outlets, craft stalls, bouncy castles, games and live music. We raised an amazing £3000 in total. The cake stall, silent auction and raffle were our biggest earners! My husband and his friends have also held the annual Isaacs 5-a-side indoor football tournament recently and raised an additional £286 which has also been donated to SMA Support UK.
We have already begun planning the next event which we hope will be bigger and better, in memory of our beautiful Isaac.