Grieving Welwyn parents fund raising in St Albans after their three-month old baby’s tragedy

Maisie Jane Totten. Picture: Simon Totten

Maisie Jane Totten. Picture: Simon Totten - Credit: Archant

A grieving couple have been fundraising in St Albans after a genetic disease took their daughter’s life at just three months old.

Sophie and Simon Totten. Picture: Simon Totten

Sophie and Simon Totten. Picture: Simon Totten - Credit: Archant

Maisie Jane Totten passed away in her parents’ arms at Keech Hospice in September this year, just two hours after being transferred there.

She had a genetic mitochondrial disorder which stopped her from gaining weight or storing energy.

Just a month earlier Maisie’s parents, Simon and Sophie Totten, a nursery nurse at St Albans Nuffield Health and Fitness centre, were living in Welwyn Garden City with no idea that their little baby had a rare and incurable illness.

The first sign that something was amiss came after a failed newborn hearing test and an unresolved problem gaining weight - the youngster never pushed past nine pounds.

However, in early August the Totten’s GP unexpectedly admitted Maisie to Lister Hospital in Stevenage and two days later she was transferred to Great Ormond Street Hospital (GOSH).

Now struggling to breath and with a life threateningly high blood acid level, Maisie was put on life support. Simon and Sophie were told she may not survive surgery.

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Simon said: “She had what felt like hundreds of tests - blood tests, x-rays, MRIs, muscle biopsies - she was like a little pin cushion.

“The whole time the doctors and nurses kept us realistic and told us she would have a short life.

“The fact that there is no cure for this type of disease, we knew she would have a short life.

“Nothing can prepare you for what that means. Our lives were turned upside-down and we had to get our heads around not having Maisie in our lives any more.”

She was transferred to Keech Hospice on September 10, passing away later that day.

Simon said: “She was a cheeky, happy little girl.

“She smiled from about two months and she was the light of our lives.

“We couldn’t have asked for a more perfect little baby.”

Sophie and Simon now dedicate all their free time to fundraising for The Lily Foundation, a charity specialising in mitochondrial diseases by searching for a cure, raising awareness and supporting families.

They recently held a cake sale and raffle at Nuffield Health and Fitness centre in St Albans, where Sophie works.

To donate to Maisie’s cause, visit out more about the charity at