Arran Edward Deega

Arran Edward Deegan was born on February 15, 2011. From the very moment he joined us, we couldn't get over his massive brown eyes and how alert he was. He was perfect. Arran reached all of his milestones on time for the first seven months, and we were anticipating all of his future firsts with excitement. Around 8 months, we noticed that Arran was regressing with some of the abilities he had initially achieved and he wasn't putting any pressure on his legs or trying sit up on his own. For the next 5 months, we battled with Arran's paediatrician on why he seemed so weak, floppy. We got nowhere. When we moved to Alliston, we immediately searched out a new paediatrician and that's when our roller coaster began.
After 3 months of performing tests and MRI’s, Arran's paediatrician referred us to a neurologist in Thornhill. After the first consult there was no doubt in his mind that there was something definitely wrong with Arran and he mentioned SMA. He sent us right down to Sick Kids that day to perform the blood tests and also sent a referral to Dr. Tarnopolsky at McMaster Children's Hospital in Hamilton. Before even getting the results of the blood test, we were seen by Dr. Tarnopolsky who confirmed, without formal results, that Arran had SMA Type 2. We were shocked, devastated and confused. We had never heard of SMA before. Everything spiralled and our beautiful son had to face this cruel disease we knew nothing about. He was only 18 months old.
After the initial shock and grieving period eased, we decided that we could either let this diagnosis consume us, or we could be proactive and learn everything we could in order to give Arran the best possible life. It wasn’t long before we came across the Families of SMA Canada web page. From the very first contact with Susi and Theresa, a weight seemed to lift. We were not alone. The support and hope we got from other families gave us courage to battle on. Within the first year of Arran's diagnosis we were sent to the annual SMA Conference in California and also to the SMA Family Camp in BC. We participated in our first Rebecca Run, and also took part in the formation of the Ontario Chapter for Families of SMA Canada. It has been a truly inspiring year for us. We have met some amazing families along the way and formed lasting connections. We look forward to the years ahead knowing there is always hope and support.
Arran will be three in February and we couldn't be more proud of him. Despite his affliction, he is such a happy, content little boy who has an amazing sense of humour and loves to make friends.. We have new firsts to look forward to now and Arran's beautiful personality has been such an inspiration to never give up.
- Andrea and Jason Deegan
2016 Update
After 3 months of performing tests and MRI’s, Arran's paediatrician referred us to a neurologist in Thornhill. After the first consult there was no doubt in his mind that there was something definitely wrong with Arran and he mentioned SMA. He sent us right down to Sick Kids that day to perform the blood tests and also sent a referral to Dr. Tarnopolsky at McMaster Children's Hospital in Hamilton. Before even getting the results of the blood test, we were seen by Dr. Tarnopolsky who confirmed, without formal results, that Arran had SMA Type 2. We were shocked, devastated and confused. We had never heard of SMA before. Everything spiralled and our beautiful son had to face this cruel disease we knew nothing about. He was only 18 months old.
After the initial shock and grieving period eased, we decided that we could either let this diagnosis consume us, or we could be proactive and learn everything we could in order to give Arran the best possible life. It wasn’t long before we came across the Families of SMA Canada web page. From the very first contact with Susi and Theresa, a weight seemed to lift. We were not alone. The support and hope we got from other families gave us courage to battle on. Within the first year of Arran's diagnosis we were sent to the annual SMA Conference in California and also to the SMA Family Camp in BC. We participated in our first Rebecca Run, and also took part in the formation of the Ontario Chapter for Families of SMA Canada. It has been a truly inspiring year for us. We have met some amazing families along the way and formed lasting connections. We look forward to the years ahead knowing there is always hope and support.
Arran will be three in February and we couldn't be more proud of him. Despite his affliction, he is such a happy, content little boy who has an amazing sense of humour and loves to make friends.. We have new firsts to look forward to now and Arran's beautiful personality has been such an inspiration to never give up.
- Andrea and Jason Deegan
2016 Update