A little girl with a rare form of dementia may have her Disneyland dream realised – after £10,000 was raised for the trip of a lifetime.
Penny Mills, 6, was diagnosed with Sanfilippo syndrome two years ago, which has already caused her to forget words she used to know.
The condition will eventually take away her ability to walk and to swallow, reports StokeonTrentLive.
Friends and family have now rallied to raised thousands of pounds for Penny, which it is hoped will be put towards a holiday.
Some of the money has already gone on a wheelchair so the youngster, from Stafford, can go on hikes with her family.
You can help donate towards the family’s dream by clicking here
The coronavirus pandemic has meant Penny hasn’t been able to enjoy her trip abroad yet.
Talking about Penny’s syndrome, mum Kelly said: “I’d taken Penny for a genetic test, thinking that if they discovered what was wrong with her, it could be treated.
“It hadn’t occurred to me we might be told she may not live beyond her teens.”
Her initial symptoms included hearing and speech difficulties, repeated nasal infections, diarrhoea and learning delay.
Penny’s adenoids were removed and she was fitted with grommets, but neither helped her hearing or speech.
She was also negatively tested for autism before reaching her true diagnosis.
Kelly, who works as a veterinary nurse, added: “I’m very keen to raise awareness of Sanfilippo and other MPS diseases.
“If doctors don’t know about them, diagnosis is delayed and children don’t get help as early as possible.
“Secondly, some clinical trials are happening around the world into MPS, but they are largely funded by charities.
“We need more people to know about MPS for it to attract more research funding to help us find a cure for this terrible disease.”
Kelly and her husband Andrew, 46, have taken Penny around the world to try to get her into clinical trials, but she wasn’t accepted either time.
She has also been supported by the Society for Mucopolysaccharide Diseases (MPS Society)
Bob Stevens, group chief executive, said: “While choosing to shield and take treatment ‘holidays’ has kept many of our young people safe, we know some of our children have suffered from tiredness and pain.
“While our families have felt isolated, with increased mental and emotional health concerns.
“We also know that once our families feel confident enough to resume their lives, they will face longer waiting lists for referrals for diagnosis and treatment.
“That’s why MPS awareness week is very important this year – our families have taken every step to protect themselves and now we want to make sure their quality of life is improved.”
Kevin Abbott, a friend of Penny’s parents, has already decided to run the London Marathon to help raise funds for MPS Society.
People can donate by clicking here.