The family of a six-year-old girl dying of “childhood dementia” might be forced to live in hostels after losing their home.
Hollie Self, a single mum from Stockport was tragically informed that she would be losing her daughter, Phoebe Self-Hindson, and her home.
In January, her landlord of five years told her he would be selling up due to financial struggles. Hollie and Phoebe have now been left stranded and desperate while searching for a new place to live.
‘No one is helping’ girl with ‘childhood dementia’
Two months after being told about her home situation, Hollie was informed her daughter had just five years left to live due to the rare genetic condition Mucopolysaccharidosis (MPS).
Dubbed as a type of childhood dementia, Phoebe will soon forget how to walk and talk, become bed-bound and will have to be fed by a tube. An illness as normal as a common cold could heavily impact her health.
“I don’t sleep, I don’t eat. We’re stuck in limbo – no one is helping. I haven’t got the headspace to deal with everything else as well as this,” Hollie said.
Even though they are on the adapted housing waiting list for Stockport Council, Hollie is worried she could be waiting a long time after their move-out date of April.
“I don’t hold anything against [the landlord], he’s just amazing. He couldn’t be a better landlord. He said he’s tried to think of everything to help us but he just can’t. In [our area], there’s a couple of specially adapted homes but the families won’t be moving out soon – it’s a case of when, and if, they come up.”
Hollie has been told that if appropriate property comes up, she has to take it, even if it’s miles away. Another property might not come up for a long time so she might be forced to move anywhere possible.
“If it comes to April and we haven’t been adapted and there’s no property to put us in, are we going to be put in hostels? How are we going to do that with a disabled child? It’s just the unknown.”
Hollie hasn’t heard Phoebe say ‘Mummy’ for two years
According to The Daily Mail, MPS, also referred to as Sanfilippo Syndrome, is “a terminal disease in which the body is missing or does not have enough of certain enzymes needed to break down long chains of sugar molecules”.
Hollie and her former partner were unaware they were both carriers of MPS. Also, nobody on either side of the family had the condition. It affects just one in 70,000 children.
Hollie is a full-time carer to Phoebe and also has another daughter, Mia Self-Hindson, who is eight.
Talking about Pheobe, Hollie said she “will eventually forget people like her family”. The little girl hasn’t said Mummy for two years, the clearest word she does say is her sister’s name Mia.
“It’s like having a baby in a six-year-old body. She’s already on the waiting list for a feeding tube. Her swallowing is quite risky, she’s on a fully blended diet.”
A close friend of Hollie’s, named Kerry O’Hara, has launched a GoFundMe page. It’s hoped it’ll help the family buy the house they’re living in and other things they might need for the final years of Phoebe’s life.
So far, they have raised over £4,600 of their £250,000 target.
You can donate to Phoebe’s GoFundMe page here.
Read more: Family of baby girl diagnosed with rare leukaemia in race against time to raise £1m to save her life
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