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Somhairle was always a little clumsy when walking, often falling over which seemed normal for any toddler starting to walk. As Somhairle passed his second birthday, and his unsteadiness remained, parents Gerry and Sarah noticed that he also struggled with stairs. Initial chats with GP’s suggested he would grow out of it and an early physio assessment didn’t pick up anything

When Somhairle started his rugby tots class at aged three it became quickly apparent that although he loved the running about and ball games he was struggling to keep up with his peers in the class and had a very awkward gait. The nursery also noted Somhairle’s balance problems and tried games and exercises to help him however he continued to appear clumsy, was continually exhausted and regularly fell over collecting bumps on his head.

Gerry and Sarah secured a second physio referral and it was at this time the physiotherapist on this occasion almost immediately recognised Somhairle’s condition. Without alarming Gerry and Sarah, or expanding on her suspicions, the physiotherapist referred Somhairle to the local Paediatrician where on the 1 August 2017 Somhairle had blood tests taken at Forth Valley Hospital.

The phone call from the Consultant Paediatrician the following morning started with the phrase “It’s not good news”. As the surreal numbness subdued and reality unfolded over the next couple of hours, Gerry and Sarah began to slowly realise their lives were about to change.

The following two weeks could only be described as a nightmare as the facts became more known to Gerry and Sarah. Eventually, on 17 August 2017, they met Somhairle’s neuromuscular consultant for the first time who gave them confirmation that Somhairle had Duchenne muscular dystrophy.

The numbness returned and all Gerry and Sarah wanted was for the clocks to be turned back and to hear something different. Their world seemed empty, unfair even cruel but the one thing that kept Gerry and Sarah going was that smile and giggle that never leaves Somhairle’s happy face.

Going back to that phone call on 2 August 2017 one of the first sources of information and comfort Gerry and Sarah found was the Muscular Dystrophy UK website.

Family Fund, “Muscle in with Somhairle” has been set up by Gerry and Sarah to help raise awareness and vital funds to support the work of Muscular Dystrophy UK into the Duchenne Research Breakthrough Fund.

Net proceeds from Muscle in with Somhairle will be split with 80% of the funds will go towards research, and the remaining 20% held in trust for Somhairle’s future care needs, which will become extensive as he grows older.

You can follow Muscle in with Somhairle on Facebook

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