Jenny Monroe talks to Tracy McCausland, founder of S.A.M
Tracy McCausland from Hillsborough is the founder member
and Secretary of the charity S.A.M (Struggle Against Muscular Dystrophy).
She is married to William and they have two sons Callum (6) and Sam (2). In
January 'i.008 the lives of the family were plunged into despair when their
hopes and dreams for their beautiful blue-eyed little boy, Sam, were left in
tatters when at just 13 months he was tragically diagnosed with Congenital
Muscular Dystrophy.
I spend a lot of my time in the States because my eldest son Callum has special needs and is being treated out there but during the summer break we are back living in Hillsborough. Most mornings I get up at 7.30am and start to get the boys ready. Sam has just started to have respiratory problems as a result of his condition, and we will soon be starting to monitor his oxygen levels during the night. Breakfast time - and in deed every mealtime - is pretty stressful too. The pressure is always on to ensure that Sam eats enough to give him calories - otherwise any activity he does is burning his muscle, which accelerates the muscle wasting. Sam's weight is closely monitored, as in the future he may require permanent insertion of a feeding tube for supplementary feeds. This is a terrifying prospect for me, but is part of the reality of life with muscular dystrophy. In many ways Sam is like a time-bomb - every day I count how many times he falls, I men- tally measure up his levels of strength in comparison to the previous day. I live in constant fear that today will be the day he stops walking.
In April 2008, with the help and support of friends, family and colleagues we set up the "pleasefixsam" campaign. We soon realized however that there is a shocking lack of funding for the vital translational research projects which might give Sam and other children like him the hope of a brighter future, and so the charity SAM (Struggle Against Muscular Dystrophy) was born. Everyone involved gives their time, expertise, products and services completely free of charge. We have also teamed up with another zero cost charity in the States, Cure CMD, this has definitely expanded the scope of S.A.M. Once a week I will have a conference call with the people from this charity to talk about our aims and objectives. It's great to chat to them as it makes me realise that as parents we aren't alone and other people are going through the same thing.
The boys are my absolute focus, but in order to give me the opportunity to get some work done whilst they are off for the summer holidays we have a part-time nanny, Zoe Mitchell, who helps me out with the boys. Currently I am spending time looking at research and what is happening as our first SAM research grant is due to go to tender at the end of August. On a day to day basis might be putting together press release! updating our web designer Neil Wilson o amendments or additions to the website working on our upcoming fundraising events, making phone calls, sending email out to the committee and trying to persuade people to help us FOC in order to maintain our zero cost base!
Ultimately my motivation is very clear - t give my child a hope of a future. No matte what state he is in, I need to know that I ca: look him in the eyes and tell him from m heart that I have done everything I could t make life as good for him as possible.
There are lots of ways to get involved ii fundraising for SAM - if you would like t help in any way please get in touch through the website https://www.helpsam.info/ .
Ulster Star
14/08/2009
