Mum Gabriella's run for Forget Me Not Hospice in memory of her daughter Thea

Gabriella Walker, who lives in Hebden Bridge with her husband Carl and their five-year-old son Calvin, is fundraising for the Forget Me Not Hospice, who cared for Thea before she died in February, aged two years and nine months.

Thea was diagnosed with progressive metabolic disease called Niemann Pick Type A, which affects the way fats, lipids, and cholesterol are stored or removed from the body, a week before her first birthday.

Gabriella says the news "turned our world upside down, ripped it apart and jumbled it up".

Thea had to be tube fed, and was unable to sit up, move around or talk. She also struggled to breathe because of her enlarged stomach.

Despite all of that, Thea reached two-and-a-half before becoming ill, and attended both mainstream and special needs nurseries.

"She was a very sociable, happy little girl despite her challenges," says Gabriella.

The family took Thea to the top of Mount Snowden, ice skating at the Trafford Centre and to the Sea Life Centre, as well as walks through the countryside.

"All of that was only possible thanks to the support we received form Forget Me Not Children's Hospice," says Gabriella.

"We were very wary about accepting a referral to a hospice, and took some convincing to go and look round, but we couldn't have been more wrong about what a children's hospice was.

"It is a happy and fun place, all about living, not dying. Right from when we received her diagnosis, Forget Me Not gave us our lives back."

Gabriella says the family were especially grateful for the hospice's help after Thea spent three weeks in hospital.

"They essentially let us move in, cooking us meals, making us relax, and enabling us to finally enjoy some actual family time rather than constantly being split in two, with half of our family at the hospital and the other half at home with the five-year old's busy social life.

"I want to raise awareness of Forget Me Not and the hundreds of families they support, with next to no government funding.

"Unlike adults’ hospices, children's receive hardly anything from central government or the NHS, but they provide so much more. They often support these children through their whole lives."

Thea passed away, at Forget Me Not Hospice, in the early hours of February 22.

"When we got Thea’s diagnosis just before she was one, you almost go through two separate grieving processes at once," says Gabriella.

"We were coming to terms with the fact that she had a life limiting illness, but also you have to adjust your entire life expectations - your child is not going to do anything you would have imagined.

"After Thea was born it used to make me smile to drive past the local secondary school, imagining how quick the time would go and that it wouldn’t be long before Calvin was walking her there on her first day.

"Of course this wasn’t ever going to happen, so after the diagnosis there was all of that - she wouldn’t ever properly taste chocolate, run away from us in the supermarket etc.

"In addition we had to learn a whole new way of being with Thea; we had to learn new methods of communication, how to tube feed and suction.

"But Forget Me Not showed us that our new normal was not anything to grieve over, we would learn the practical things and actually we could still live a normal life. It might take a bit of extra effort and adaptation but it is not ‘game over’, its just a new normal and you can be happy again.

"Through Forget Me Not we met so many people in similar situations who were perfectly happy and getting on with life and it made us realise all of this. We just had to adapt to our new normal and everything could be as happy as it was as long as she was with us.

"We are immensely grateful for all the love, support, and donations that have flooded in during such a hard time for our family.

"I had signed up for the run a long time before this recent stay and no amount of money could symbolise how grateful we have been for their support, right from the beginning.

"It's my very small way of saying thank you. If I can help just one more family find the support that we have it will be worth it."

The run takes place on Sunday, May 19. To donate, visit https://www.justgiving.com/fundraising/theawalker.