For five years Zoe Crowson has devoted her time entirely to looking after her little girl who was born with the rare genetic skin condition Recessive Dystrophic Epidermolosis Bullosa or EB.
She has also raised thousands of pounds for the charities that support sufferers and their families.
Now with Phoebe, five, at school, although not yet full time, has decided to use her skills to start her own charity - The Phoebe Research Fund - to raise money for research into her daughter’s condition.
Zoe, 37, said: “It is a rare disease with lots of different sub categories. And I feel if ever there was any chance of a cure for EB sufferers then 100% of funds needs to go into research.
“Medical advances are coming on leaps and bounds, however, it takes much needed funds to make this happen.
“Through stem cell therapy carried out by Professor John McGrath there is a possible light at the end of the tunnel.”
Phoebe was diagnosed with a mild condition of EB soon after she was born, where the skin blisters and breaks away at the slightest touch. She has now been classed as ‘intermediate’, a more serious stage of EB because of blisters on her internal lining.
“That is worse than what we thought,” Zoe, a former commercial editor who gave up work to care for her daughter, said.
Phoebe has had problems with swallowing and chocking and had to undergo three oesophageal dilations (throat stretches) under anaesthetic at Great Ormond Street Hospital this year.
She has stopped breathing on more than one occasion prior to it and her oesophagus was found to be only 1mm in width, which is extremely narrow.
Although Phoebe is now a student at Copthill School, in Uffington, because of how unpredictable her condition can be Zoe has to be on hand for should the school calls her.
Phoebe will also have to undergo frequent surgery and will be in and out of Great Ormond Street all her life.
And while Phoebe “copes with everything really well” she has to be watched while eating, because of the threat of chocking, checked for blisters that have to be lanced and soothed frequently when she is in pain.
Zoe, of Pilsgate, said: “That makes me unemployable as she needs care 24/7. And as I’ve been quite good at raising money in the past what I decided to do is start a charity and use my skills.
“The Phoebe Research Fund will raise awareness of EB with 100 per cent of funds going into research.
“Lots of people have supported us over the years and I feel there would be help in the community which has been incredibly supportive over the years.”
The Phoebe Research Fund is awaiting a charity number and will start fundraising as soon as it comes through.
Anyone who wants more information can contact Zoe on e-mail email@example.com