Building a lifetime of memories for our ‘Mr Charisma’
Four-year-old has cruel condition
Almost a year to the day he was diagnosed with the cruel, lifelimiting condition Duchenne Muscular Dystrophy, Stirling four-yearold Somhairle McMenemy should be at the summit of one of Britain’s highest peaks.
The culmination of a 24-hour charity fundraising effort by friends is a moment which promises to be particularly poignant and bittersweet for parents Gerry and Sarah, a year on from the single phone call which changed all their lives.
Somhairle (pronounced ‘Sorley’) was always a bit clumsy when walking, but it became particularly noticeable when he started a rugby tots class at the age of three.
While he loved running about and ball games he struggled to keep up with his peers and had “a very awkward gait”.
His nursery had also noticed Somhairle’s balance problems and tried games and exercises to help him but he was continually exhausted and regularly fell over.
At a further physiotherapist referral his condition was almost immediately recognised and, without alarming Gerry and Sarah, the youngster was referred to a paediatrician and 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”.
Two weeks later Somhairle’s
neuromuscular consultant at the Queen Elizabeth Hospital in Glasgow confirmed he had Duchenne’s, a rare form of muscular dystrophy thought to currently affect only 250 boys or young men in Scotland and 2500 in the UK overall. The genetic disorder is characterised by progressive muscle degeneration and weakness caused by an absence of dystrophin, a protein that helps keep muscle cells intact. It causes muscles including vital organs - to weaken and waste over time, leading to increasing and severe disability.
Symptom onset is in early childhood, usually between ages of three and five. The disease primarily affects boys and life expectancy is generally around
late teens to early 20s, although there have been some cases of people living into their 30s and 40s.
Gerry, a senior police officer in the Stirling area for 22 years, and Sarah, a community nurse for the Bannockburn area, not only had to adapt their working lives, they also had to try to come to terms with their expectations for Somhairle and his future.
“We are grieving for the future we have lost,” said Sarah. “There are sad days, but we try to treat him as much as possible like any other boy.
“We are, however, building a lifetime of experiences and