Steph Preston highlights the issues faced by those with mitochondrial disease

Kieran Preston

Steph Preston, from Rochdale, is aiming to highlight the issues faced by those with mitochondrial disease by sharing her younger brother Kieran’s story after he died on Friday 17 March from the disorder.

Kieran, who suffered from mitochondrial disease, was born on 3 June 1998 and died aged just 18-years-old.

Steph and her older sister Kelly have now lost three siblings to the disease as their 20-year-old sister, Stacey, died from the disease 16 months ago, as did another sister Kristen, aged three-months-old in November 1992.

Steph says it has been "one battle after another with recognising the disease, specialist equipment, financial and family relationship costs, lost friends and family, social isolation and 24-hour care".

Kieran, who was cared for 24 hours a day by his parents in Northwich, was gastronomy-fed and wheelchair bound, and also suffered from bowel and stomach failure, bladder failure, epilepsy, osteoporosis, brain damage, muscle wasting, uncontrolled neuropathic pain and nutritional failure. He was also given strong pain relief to be reduce his discomfort.

Speaking fondly about her brother, Steph said: “He was such a special brave boy. My special memories are the kisses and hugs he gave me. Kieran was non-verbal, but he loved a cuddle and a kiss. You could see the love he had for his family in his eyes and gestures with his hands.”

Mitochondrial disease can be passed on as a recessive disorder if both the mother and father carry a mutated gene. It is a rare, metabolic illness that can be present at birth or develop later in life. It is progressive, and there is currently no cure.

Mitochondria are often referred to as ‘the powerhouse as the cell’, as they provide most of the body’s energy. They are small structures present in every cell in the body (except for red blood cells).

Every organ in the body is dependent on mitochondria to function effectively. If mitochondria don’t function efficiently, their energy-producing ability is reduced and cell damage may occur and disease may result.

In a moving tribute, Steph said: “We want his final celebration day to be as perfect as can be for such a special little boy.

“We loved Kieran more than words can say, and he will be so missed by us all. The physical pain will never end now Kieran has left us. He was a very special brave boy, who suffered all of his life, and we will dedicate all of our undying love for all eternity to our gorgeous prince, Kieran Paul Preston.”

Kieran’s funeral will take place at St Helen’s Witton Church in Northwich on Thursday 6 April.

To donate towards Kieran’s funeral, visit:

https://www.gofundme.com/vf2mkr-kierans-final-memorial-day