When Jessica Hill gave birth to her baby Alice Poppy in March 2013, it felt as though her life was perfect.

The young mother – who grew up in Inkberrow before training to be a vet and then settling near Cheltenham – absolutely loved having such a beautiful healthy baby girl.

But while Alice thrived and developed normally -rolling over, eating different foods and even feeding herself with a spoon – her mum was about to discover the devastating news that her precious daughter did not have long to live.

And now after the tragic events of Alice’s short life, her mum is undertaking a huge personal challenge to raise funds in for Acorns Children’s Hospice in Worcester – the place which helped Jess and her family through some of their darkest days and also gave them “the best times” with this cherished little girl.

Jess realised something was wrong with Alice when she was six to eight months old - she had stopped rolling over, holding toys, being able to shake her rattles and knock over towers of bricks. She couldn’t hold up her head and her hands and feet started trembling.

“I will never ever forget the day we saw the paediatric consultant in Cheltenham just after Alice was eight months old. She immediately told us there was something seriously and life-limiting wrong with Alice but she needed more tests to establish what it was,” said Jess.

“It was like being hit with a sledgehammer. I cried all night thinking that she must have a brain tumour. Mine and Alice’s whole world had just come crashing down.”

More tests quickly followed and, after discovering abnormalities in her brain tissue, she was admitted to the John Radcliffe Hospital in Oxford where the consultant said her illness was catastrophic and that she probably only had months to live. During the investigations she had an extreme reaction to the general anaesthetic used for her MRI scan and nearly died.

“When they handed her back to me after the scan, I shouted to tell the nurses something was seriously wrong. She was blue and floppy. The paediatric crash team arrived and took her to the high dependency unit. The consultant said the scan looked dreadful and asked if we wanted her to be resuscitated or not.

“We decided to give her every chance of survival. The doctors and nurses were incredible and worked all night to get her better while we sat round her bed all night. I remember saying ‘I know she’s going to die of this disease but I just want her to come home for Christmas first’.”

Alice fought on and went home a week later. “When she came round from her unconscious state and smiled at me I was so grateful we had more time with her. I never thought I’d see that beautiful smile again,” said Jess.

Alice was eventually diagnosed with a mitochondrial disease, which was in her DNA. This caused her to develop normally and then, after a few months, to start regressing.

As she deteriorated in the following months she became very floppy, had lots of seizures, muscle spasms and also lost her sight. She cried a lot and had to be fed through a tube. “It was hugely distressing for me,” said Jess. “She was the most beautiful little girl I have ever seen and she was braver than anything in the world.”

When they returned home from hospital one of the first calls she received was from a support worker at Acorns Children’s Hospice in Worcester.

“She visited us the next day and visited once or twice every week after that,” said Jess. “She was always there at the end of the phone – day or night, attended most of Alice’s consultant appointments and acted as a co-ordinator between all the different teams involved in Alice’s care.

“I vividly remember the first time I visited Acorns. I was walking around thinking ‘This is so unfair. I should be visiting nurseries – not a children’s hospice’.”

But Jess soon discovered that the staff and facilities were wonderful and nothing was too much trouble. “They understood what we were going through, made us feel like part of their big family and somehow keep it a happy, fun place to be.

“Acorns was by far the biggest influence I had in the months after she was diagnosed. They really looked after us as a family because Alice was a grandchild as well and they looked after my parents too. Acorns was our lifeline.

“They gave us the best times with Alice. A lot of my best memories of Alice are at Acorns. They had a lovely hydrotherapy pool so I could take her swimming, which she loved, and there are beautiful gardens I could take her round in the buggy. There is a sensory room and more toys and equipment than you can imagine.

“There were amazing doctors in charge of palliative care. Talking about the end of your child’s life is not something anyone wants to do. The doctors, nurses and carers at Acorns are too incredible for words.”

Alice died at home in her mum’s arms in September 2014 – aged just 18 months and 10 months after her diagnosis. “After she died they took us through all the official things like registering her death and making her funeral arrangements. I honestly don’t know how we would have got through our journey without Acorns,” said Jess.

The 34-year-old horse vet , who still calls in to see everyone at Acorns, is now preparing to do a hugely demanding six-day husky sledding challenge to raise funds for the hospice in Alice’s memory.

“I will be driving a team of huskies 250km from Norway to Sweden along with 15 others. We will be sleeping on reindeer skins, in tents and cooking on campfires. There will be no phones, no toilets, no showers and temperatures can be as low as -20C. There will be times when we are going uphill and the huskies won’t be able to pull the sled on their own so I will have to push.

“The event goes from April 12 to 19. It is my birthday week and I always wanted to visit that region. I feel I need to do something positive. Acorns Children’s Hospice is all charity funded and each hospice costs £7,500 per day to run. It would be lovely to help other families as I was helped.”

Jess is appealing for people to support her fundraising efforts in aid of Acorns. Her target is £4,000 but she would like to double that figure because she says the hospice needs all the financial support it can get. Anyone who wants to donate money or wants to read more of Alice’s story can log onto http://www.justgiving.com/JessandAlicePoppy

Donations can also be made directly to acorns at https://www.acorns.org.uk/component/com_jdonation/Itemid,430/campaign_id,0/view,donation/ and by sending a cheque payable to Acorns Children’s Hospice, at Acorns Children’s Hospice, 350 Bath Road, Worcester WR5 3EZ, or over the phone by calling 01564 825 000.

One of the other members of the challenge team read their story on the Just Giving website and was so touched by it that he is now dedicating his efforts to raising money for Acorns.

“We haven’t met because he is from a different part of the country but we have exchanged e-mails. It is really touching. I have been in contact with some incredibly kind people,” said Jess.

“Despite my tragic story, I wouldn’t have swapped Alice for the world. She was a blessing. She was so beautiful and strong and I promised her I would live my life the way I would have wanted her to live hers.

“I would have done anything to make her better, but I couldn’t. All I could do was to look after her the best I possibly could and try to be the best mum I could be.”