A father who lost his two-year-old son to a ‘horrible disease’ is raising awareness of the condition.
Murray and Hannah Hambro made the heart-breaking decision to turn off their son Louis’ ventilator just days after finding out he had a mitochondrial disease.
They raised more than £7,000 for a children’s wish charity in July with an exercise challenge and are now sharing their story for Global Mitochondrial Disease Awareness Week.
Murray, 37, said the ‘horrible disease’ took their son from them: “There is no treatment or cure for the disease. You just have to sit back and watch your child regress to the point where they pass away.”
There are more than 200 types of mitochondrial disease with many symptoms. It is a mutation of the part of cells which convert food into energy.
Murray said they did not realise their son was ill until he was 18 months old, when he started to drag one of his feet. His condition quickly deteriorated over the next six months. Muscle contractions left Louis in constant pain, and his mother and father quit their jobs to care for him.
By the end of his life, Murray said his son was like ‘a limp stick on a feeding tube’.
Despite several tests, doctors could not pinpoint what was wrong with Louis until a muscle biopsy which took three months. Louis had contracted a chest infection by this point, and Murray and Hannah decided to switch off his ventilator when it was clear he would not recover.
Murray described Louis as ‘a gift’, with ‘the biggest beaming smile’. On the JustGiving page for their fundraising, he said: “Louis lived up to the meaning of his name ‘warrior’, he fought so hard to the end.
“It was amazing how much a child can impact your life in such a short time.”
After Louis’ death, Murray, Hannah, 35, and their friends took part in a memorial exercise challenge at Reebok CrossFit Connect Gym in Basin Road, Portslade.
They raised more than £7,000 for Taylor Made Dreams, a wish charity for terminally-ill children which reached out to the family before Louis died. Murray said: “Both me and my wife pushed as hard we could because of what Louis had to endure.”
The founder of Taylor Made Dreams, Suzi Mitchell, said: ‘Louis’s parents, Murray and Hannah, are such an inspiration. We are so proud of them and are deeply grateful for their support.”