Thurston mother and son, 10, who suffer from same life-limiting illness launch charity
A mother and her 10-year-old son who suffer from the same life-limiting illness have launched a charity to raise awareness of the condition.
Stephanie Brooks and her son Jake have mitochondrial disease, a complex illness which reduces the amount of energy cells produce and can affect each person differently.
Stephanie, who was diagnosed just over six years ago – about six months after her son – has Leigh’s Syndrome, NARP variant (Neuropathy, Ataxia and Retinitis Pigmentosa), which causes chronic widespread pain and has left her reliant on a mobility scooter.
Jake has Maternally Inherited Leigh’s Syndrome and uses a wheelchair as he is unable to walk far, suffers from fatigue and has severe learning difficulties.
Mitochondrial disease has been highlighted by TV soap Coronation Street after Leanne Battersby’s son Oliver was diagnosed with the condition and Stephanie and Jake have launched their own charity to raise awareness.
Steph and Jake’s Mito Mission, part of the umbrella charity My Mito Mission, also aims to raise money for research into treatments and cures.
Stephanie, 35, of Thurston , said: “When myself and my husband (Paul) got the diagnosis for Jake we had never heard of it. We were completely bamboozled by it.
“We went away and did the worst thing a person can do and Googled it and it frightened the life out of us. If we can raise awareness and make the disease more prominent, it will make other parents not feel the same way as me and Paul did.”
She said that it could take a trauma to the body to trigger symptoms and Jake, who turns 11 on Monday and attends Riverwalk School in Bury St Edmunds , was diagnosed after catching chicken pox aged 15 months and more than two years of tests. Stephanie was diagnosed after breaking her leg.
On how the condition affects them, she said: “I can’t walk any further than 15 to 20 metres without being in agony so I have to use a mobility scooter. Jake can walk even less than I can and his balance is absolutely terrible. He uses a wheelchair. We also both have a lot of fatigue. It isn’t just tired – your body hits a brick wall and you know going for a nap isn’t going to solve it.
She said they had an ‘amazing support network’ which included husband Paul, 36.
Stephanie is writing a book about their experience and will light up their bungalow green for Mitochondrial Disease awareness week from Sunday.