StorieS. SMA. Dedicated to finding a cure and treatments for Spinal Muscular Atrophy. Early years. Our little ... he los
SMA
Stories
Dedicated to finding a cure and treatments for Spinal Muscular Atrophy
Ayden Early years Our little boy Ayden was born in March 2014. We named him Ayden, a variant of the Arabic name Aydin which means power or strength. And he certainly lived up to his name! Born a sturdy 4kg, he was a strong and robust boy, dwarfing all the other babies in his playgroup. We joked that he would probably grow up to be a boxer or a rugby player. Like most first time parents, our first year with Ayden was a sleep-deprived whirlwind of changing nappies, sterilizing bottles, night feeds, pureeing food, and more nappies. We delighted in his first smile, his first laugh, the first time he rolled over, and all the other milestones he reached. When he turned one, we breathed a sigh of relief – we’d made it. We had survived our first year as new parents. Things would get easier now. All the other parents said so.
Ayden Anjarwalla
But then everything changed.
Early symptoms & diagnosis We first noticed something was wrong when Ayden was 11 months old. When we held him up against the coffee table, he could no longer hold on and support his weight – his legs buckled beneath him. Still, we weren’t unduly concerned, and put it down to weakness from a recent stomach flu. But his paediatrician was concerned, and referred us for further tests. One week later – two weeks after
his first birthday – Ayden was diagnosed with SMA Type 2, a condition we had never heard of before. We learned that our perfect little boy would never walk, and our world fell apart. The next 6 months were a blur of hospital visits, doctors’ appointments, physiotherapy sessions, occupational therapy sessions, orthotics castings, and meetings with wheelchair suppliers. We clung to the hope that somehow this was all a mistake, that the doctors had got it wrong.
But soon the symptoms were too stark to ignore. In the 6 months following his diagnosis Ayden’s strength deteriorated dramatically; he lost the ability to stand, sit independently, roll over and even lift his head. Memories of him running across the living room in his baby walker seemed surreal.
1 in every 40 people is a carrier of the defective gene that causes SMA
The child of two carriers has a one in four chance of developing SMA We are also very excited about the possibilities offered by robotics and technology in general, which we believe have the potential to transform the lives of those living with SMA and other disabilities.
Why we support The SMA Trust We are so hopeful about the medical research into SMA that is currently being undertaken. Research scientists know what causes SMA and are on the verge of major breakthroughs, and we know that this would not be possible without the work of organisations such as The SMA Trust. Their work to date has been fantastic, and we will continue to support them in whatever way we can.
Aliya, Khalil an d ayde n
By Aliya and Khalil Anjarwalla
Daily life A year ago, when we first received the shattering news of Ayden’s diagnosis, the idea of regaining any kind of routine or sense of normality seemed impossible. But incredibly, it has happened. A typical day involves getting Ayden up and dressed, followed by 30 minutes of stretches and exercises. We recently invested in a Cough Assist machine, which we now use every morning to clear out Ayden’s chest. For breakfast and lunch we put Ayden in his standing frame, and in between meals he also does a couple of sessions of active standing in his orthotics. We try to take him swimming as much as we can – he loves it and it’s great exercise! In between all this he loves getting into his Panthera wheelchair and exploring (his favourite place is the kitchen, particularly if there are any biscuits lying around). After dinner it’s bath time, then more stretches, a story and finally bed.
Sometimes things are difficult – catching a simple cold can be devastating for Ayden and takes him months to recover, and we worry constantly about his posture and spine alignment, and any stiffness in his joints. But on the whole, our daily life feels normal again, and we are so proud of everything that Ayden achieves every day.
Hopes for the future We are hopeful that one day there will be a treatment or cure for SMA, and are encouraged by all the advances in research that have been made in recent years.
AYDEN
get involved Find out how you can help us fund vital research to find a cure and treatments for SMA by visiting www.smatrust.org or calling us on 01789 801155. The SMA Trust 1c Atherstone Barns, Atherstone on Stour, Stratford-upon-Avon, Warwickshire CV37 8NE Telephone: 01789 801155 Email:
[email protected] twitter.com/smatrust Registered Charity Number: 1097765
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www.smatrust.org
