The mother of a six-year-old girl dying of ‘childhood dementia’ claims she may have to spend her final years in hostels – after losing their home.
Single mother Hollie Self, from Stockport, Greater Manchester, faced every family’s worst nightmare after being told she would lose both her home and her daughter Phoebe Self-Hindson in three months.
The 30-year-old says her landlord of five years informed her in January that he was selling due to financial problems, leaving the stranded family desperate to find a new home.
Just two months later, the mother was told her six-year-old daughter had only five years to live due to the rare genetic disorder Mucopolysaccharidosis (MPS), but even less so if her symptoms continue to worsen at this rate.
Cruelly referred to as a form of “childhood dementia,” Phoebe will eventually “forget” the ability to talk and walk, becoming bedridden and tube-fed before an illness as simple as a cold can become fatal.
Hollie said, ‘I’m not sleeping, I’m not eating. We are stuck in limbo, no one is helping. I don’t have the space to handle everything else so well.’
Single mother Hollie Self, from Stockport, Greater Manchester, claims she and daughter Phoebe may be forced to spend her final years in hostels – after losing their home
Pheobe, six, has a rare genetic condition Mucopolysaccharidosis (MPS), also known as childhood dementia
The family is currently on the waiting list for adapted housing for Stockport Council, but a distraught Hollie fears she will have to wait well past their April move date for a specially adapted home to be found.
Stockport Council were ‘sorry to hear about the difficulties the family was experiencing’ and said they provide ‘comprehensive housing services’ through Stockport Homes who would work with her to ‘find suitable accommodation’.
Hollie said, “I don’t feel like packing up the house and planning to move schools.
‘I have nothing against (the landlord), he’s just great. He couldn’t be a better landlord. He said he has thought of everything to help us but he just can’t.
‘In (our region) there are a few specially adapted houses, but the families will not move quickly – it’s a matter of when and if they come.
“If no one moves out of an adapted building, who’s to say it’s not years?
“We have been on this list since March and no property has come in yet.
“We’ve been told if a suitable property comes along and it’s miles away then I’ll have to take it as there may not be another property for years so I feel like I’ll be forced to move elsewhere .
“This house is the only house the girls will remember.
Cruelly referred to as a form of ‘childhood dementia’, Phoebe will eventually ‘forget’ the ability to talk and walk, becoming bedridden and tube-fed before an illness as simple as a cold can become fatal
Hollie faced every family’s worst nightmare after being told she would lose both her home and her daughter Phoebe in three months
Hollie says she fears she and her daughter will have to stay in hostels and wondered how she would do that with a disabled child
Pheobe has MPS – also known as Sanfilippo syndrome – a terminal illness in which the body lacks or does not have enough of certain enzymes needed to break down long chains of sugar molecules
“It’s full of memories. (Phoebe) has a form of dementia and needs familiar things.
‘If it comes April and we are not adapted and there is no accommodation to accommodate us, will we be accommodated in hostels? How are we going to do that with a disabled child? It’s just the unknown.’
MPS – also known as Sanfilippo syndrome – is a terminal illness in which the body lacks or does not have enough of certain enzymes needed to break down long chains of sugar molecules.
She was unaware that Hollie and her former partner were both carriers of MPS, but no one on either side of the family had the condition – which affects only one in 70,000 children.
Hollie, a full-time caregiver for Phoebe and mother to eight-year-old Mia Self-Hindson, said medics have given her six-year-old daughter only five years to live, or even less if her symptoms continue to worsen. .
She hasn’t heard Phoebe say “Mommy” in two years and is afraid that her daughter will one day forget her completely.
Hollie said, “(Phoebe’s) is losing all the skills she’s learned.
“She forgets how to swallow* she forgot how to talk, she says a sound every now and then.
Phoebe’s condition is progressing faster than doctors predicted, and they fear she may soon enter a vegetative state
According to Hollie, Phoebe is on the waiting list for a feeding tube because her swallowing is “quite risky.”
“Eventually she will forget about people like her family. She hasn’t said mommy in two years, the clearest word she says is her sister’s name, Mia.
“It’s like having a baby in a six-year-old’s body.”
Phoebe’s condition is progressing faster than the doctors had predicted, and there are fears that she may soon enter a vegetative state.
Hollie said, ‘Vegetative state is what they said. It is progressing much faster than the doctors thought.
“She is already on the waiting list for a feeding tube because swallowing is quite risky and she is on a completely mixed diet.
‘We’ve never been abroad, we’ve never had passports. All these things that we thought we had to do all our lives, we actually haven’t done.’
Hollie’s close friend Kerry O’Hara has launched a Go Fund Me page in an effort to help the family purchase the home and other expenses they may need for the last few years of Phoebe’s life.
Kerry said, ‘I wanted to do something. I can’t make it better for her, I can’t fix Phoebe, but what I can do is try to make her life a little easier.
“Any memories she has of Phoebe’s house are gone.
“The only way I can help her is by trying to raise money to buy the house…”
A spokeswoman for Stockport Council said: ‘The council is sorry to hear of the difficulties and fear this family is experiencing. Stockport Council provides a comprehensive homelessness and housing options service through Stockport Homes.
“We encourage the family to speak to Stockport Homes as soon as possible so they can discuss what support and possible options are available.
‘This service works with individuals/households who have a housing need with the Council and works with them to prevent them from becoming homeless or to help them find suitable accommodation.’
Stockport Homes said they had nothing to add to the council’s comment.
Meanwhile one fundraising page was set up to help the family.