The mother of a six-year-old girl dying of ‘childhood dementia’ claims they may be forced to live out 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 be losing both her home and her daughter Phoebe Self-Hindson within a period of three months.

The 30-year-old says her landlord of five years informed her in January that he would be selling up due to financial difficulties, leaving the stranded family desperately searching for a new home.

Just two months later, the mother was told her six-year-old daughter had just five years left to live due to the rare genetic condition Mucopolysaccharidosis (MPS) – but even less if her symptoms continue to deteriorate at this speed.

Cruelly dubbed as a type of ‘childhood dementia’, Phoebe will eventually ‘forget’ the ability to talk and walk, become bed-bound and tube-fed before an illness as simple as a common cold could turn fatal.

Hollie said: ‘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.’

Single mother Hollie Self, from Stockport, Greater Manchester, claims she and her daughter Phoebe may be forced to live out her final years in hostels – after losing their home

Pheobe, six, has a rare genetic condition Mucopolysaccharidosis (MPS) which has been dubbed childhood dementia

The family are currently on the adapted housing waiting list for Stockport Council – but distraught Hollie fears she could be waiting long beyond their move-out date of April before a specially adapted home is found.

Stockport Council were ‘sorry to hear about the difficulties experienced by the family’ and said they provide ‘comprehensive housing service’ through Stockport Homes, who would work with her to ‘identify suitable accommodation’.

Hollie said: ‘I don’t want to have to start packing the house up and start planning moving schools.

‘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.

‘If nobody moves out of an adapted property, who’s saying it’s not years?

‘We’ve been on this list since March and not one property has come up yet.

‘We’ve been told if an appropriate property comes up and it’s miles away I have to take it, because another property might not come up for years so I feel like I’m going to be forced to move anywhere.

‘This house is the only house the girls are going to remember.

Cruelly dubbed as a type of ‘childhood dementia’, Phoebe will eventually ‘forget’ the ability to talk and walk, become bed-bound and tube-fed before an illness as simple as a common cold could turn fatal

Hollie faced every family’s worst nightmare after being told she would be losing both her home and her daughter Phoebe within a period of three months

Hollie says she fears she and her daughter will have to stay in hostels and questioned how she would do that with a disabled child

Pheobe has MPS – also known as Sanfilippo Syndrome – 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

‘It’s filled with memories. [Phoebe] has a form of dementia and needs to be around familiar things.

‘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.’

MPS – also known 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.

Unknown to her, Hollie and her former partner were both carriers of MPS but no one on either sides of the family had the condition – which affects just one in 70,000 children.

Hollie, a full-time carer to Phoebe and also mother to eight-year-old Mia Self-Hindson, said medics have given her six-year-old daughter just five years left to live, or even less if her symptoms continue to deteriorate.

She hasn’t heard Phoebe say ‘mummy’ for two years and fears her daughter will one day forget her altogether.

Hollie said: ‘[Phoebe’s] losing all the ability she has learnt.

‘She’s forgetting how to swallow* she’s forgotten how to speak, she says the occasional sound.

Phoebe’s condition is progressing faster than doctors predicted, with fears she could soon end up in a vegetative state

According to Hollie, Phoebe is on the waiting list for a feeding tube because her swallowing is ‘quite risky’

‘She will eventually forget people like her family. She 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.’

MPS explained…

Mucopolysaccharide (or MPS) is a rare and inherited metabolic disorder which causes a problem with lysosomal function.

Lysosomes are the ‘recycling centres’ of the cells, and help get rid of waste.

But in this disease, there is a deficiency of a particular enzyme which means that waste products are not broken down leaving unwanted substances in the cells of the body which cause progressive damage.

Over time, this damage results affects the individual’s appearance, physical abilities, organ and system functioning, and, in most cases, mental development.

Symptoms may vary from person to person.

Phoebe’s condition is progressing faster than doctors predicted, with fears she could soon end up in a vegetative state.

Hollie said: ‘Vegetative state is what they said. It’s progressing a lot quicker than the doctors thought.

‘She’s already on the waiting list for a feeding tube because her swallowing is quite risky, she’s on a fully blended diet.

‘We’ve never been abroad, we’ve never had passports. All these things we thought we had our whole lives to do, we actually haven’t.’

Hollie’s close friend Kerry O’Hara has launched a Go Fund Me page in a bid to help the family purchase the house and other expenditures 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 and make her life that bit easier.

‘All of the memories she has in that house of Phoebe are gone.

‘The only way I can help her is to try and raise the money to buy the house..’

A spokeswoman for Stockport Council said: ‘The council is sorry to hear about the difficulties and anxiety experienced by this family. Stockport Council provides a comprehensive homelessness and housing options service through Stockport Homes.

‘We’d encourage the family to speak to Stockport Homes as soon as possible so they can discuss what support and potential options are available.

‘This service works with individuals/households presenting to the Council as being in housing need and works with them to either prevent them becoming homeless or to assist in identifying suitable accommodation.’

Stockport Homes said they had nothing to add to the council’s comment.