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

PUBLISHED: 17:00 21 October 2018

Maisie Jane Totten. Picture: Simon Totten

Maisie Jane Totten. Picture: Simon Totten

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 TottenSophie and Simon Totten. Picture: Simon Totten

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.

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 www.justgiving.com/campaign/TeamMaisie?utm_term=eEBpG3d4K

Find out more about the charity at www.thelilyfoundation.org.uk

More news stories

Yesterday, 17:00

Unseen work by a successful artist has been discovered and published by her son after her passing.

Yesterday, 12:00

A St Albans man is hoping to raise over £200 for charity through a Christmas lights display.

Yesterday, 09:00

A thief from St Albans who used multiple aliases was given a suspended sentence for stealing from and damaging cars.

Fri, 15:51

A London Colney primary school went the extra mile for its nativity play by including a real donkey and baby.

CountryPhile

I should probably have taken the hint! Walking out into the garden recently an unprecedented flock of thirty or more crows raucously greeted me from the treetops at the bottom of my garden. Cawing and croaking these big, black birds clung clumsily to the top most branches and twigs, jostling and flapping to stay balanced in a constant flurry of feathers. There is always something ominous about crows – they are after all carrion crows, the vultures of the bird world – always watching for scraps and weakness that might mean their next meal.

Digital Edition

Image
Read the The Herts Advertiser e-edition E-edition
Zoo Watch CountryPhile

Newsletter Sign Up

Herts Advertiser weekly newsletter
Sign up to receive our regular email newsletter

Our Privacy Policy

Most read stories

Hot Jobs

Show Job Lists

Herts Most Wanted Herts Business Awards