Family of six-year-old dying of 'Childhood Dementia' faces homelessness

The mother of a six-year-old girl dying of childhood dementia fears they may be forced to live out her final years in hostels - after losing their home.

Hollie Self was recently told her daughter Phoebe has just five years left to live due to the rare genetic condition Mucopolysaccharidosis (MPS) - but even less if her symptoms continue to deteriorate at their current speed.

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 prove fatal. 

The mother-of-two from Stockport has also been told her landlord is selling up due to financial difficulties, leaving the family desperately searching for a new home.

Hollie said: "Phoebe's going to end up in a vegetative state. She's going to be bed bound or in a wheelchair all the time. She's not going to be able to do anything. The dementia side of it means she's going to forget everybody. She's going to forget who I am. She's going to forget who her sister is. She's going to forget everything."

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

Hollie said: "I don't sleep. I don't eat. I just wake up and be a mum and that's all I can do. I I've no idea where we are going to end up. The worst case scenario would be hostels or temporary accommodation somewhere out of the area.

Stockport Council and Stockport Homes said they understood the worry and concern the situation was causing and their priority was to identify a suitable property for Phoebe and her mother Hollie before their tenancy ends.

In a statement they said: "In July Stockport Homes assessed the household needs but, unfortunately, at this time there are no suitable adapted homes available. Like many other places,  homelessness is at an all-time high and we have an acute shortage of adapted three-bedroom properties - which would be suited to Phoebe and her family.

"Stockport Homes will continue to do all they can to support Phoebe’s family and ensure a housing solution is arrived at before their tenancy ends later in 2024.

Hollie's close friend Kerry O'Hara has launched a Go Fund Me page in a bid to help the family purchase their existing house and other expenditures they may need for the last few years of Phoebe's life.

Kerry said: There's a big worry that if Phoebe is not in surroundings she is familiar with she actually might regress a lot quicker. All of Hollie and Mia's friends and support network are around this area so to have to give all that up as well - it's just beyond cruel."

To find out how to donate to the fundraising page set up for Phoebe and her family click here

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