Mum fears girl dying of 'childhood dementia' will spend final years in hostel

01 September 2023 , 18:40

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Mum Hollie Self with daughter Phoebe Self-Hindson (Image: Kennedy News & Media)

The mum 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 mum 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 mum 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 says she found out she was losing her home and her daughter in the space of three months (Kennedy News & Media)

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 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. 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.

London flat for rent for £1,400 a month with bed tucked away in kitchen cupboard

Phoebe has just five years left to live due to the rare genetic condition Mucopolysaccharidosis (Kennedy News & Media)

Phoebe will eventually 'forget' the ability to talk and walk (Kennedy News & Media)

"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. 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."

The family are currently on the adapted housing waiting list for Stockport Council (Kennedy News & Media)

Hollie fears she could be waiting long beyond their move-out date of April (Kennedy News & Media)

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 mum 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 with daughters Mia and Phoebe (Kennedy News & Media)

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. 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."

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."

Hollie's close friend Kerry O'Hara has launched a Go Fund Me page in a bid to help the family purchase the house (Kennedy News & Media)

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. To make a donation, click here.

Eleanor Ovens