Local mum Hollie is facing 'pain and heartbreak that cannot be described in words', with a terminally-ill daughter and the prospect of losing the family home. 

Six-year-old Phoebe suffers from a terminal condition called Sanfilippo Syndrome, for which there is no cure. 

The condition - described as 'dementia, autism, ADHD and Parkinson's all combined into one awful disease' - means Phoebe has lost the ability to speak and walk, and has been given a life expectancy of 10-15 years. This means her family could have as little as four years left with her. 

Further still, Hollie has found out that her landlord is having to sell her home. As she is a full-time carer to Phoebe, Hollie has no way of purchasing the house from the landlord, and thus sought help from Stockport Council. 

The family is currently on the adapted housing waiting list. However, given the rarity of adapted housing (there are three in the area, all currently occupied), Hollie is concerned that it could be years before a specially adapted home is found. 

A fundraiser has been set up on behalf of the family, to help raise money to buy the house from Hollie's landlord, and make Phoebe's life as stable and easy as possible as her condition degenerates.  

Hollie told The Daily Mail: "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."

Phoebe's condition and memory loss requires a familiar environment, which is why a house move would be so disruptive (Image - Neil Blakeman)

The family could be forced to move to a property many hundreds of miles away if no local adapted housing comes up. 

Hollie adds: "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."

Phoebe's disease, Mucopolysaccharidosis (MPS) (or Sanfilippo Syndrome) is a rare genetic disorder. It affects a child's ability to break down certain carbohydrates, leading to a build up which in turn causes damage to the nervous system, physical appearance, and mental development. 

The disease is often referred to as 'Childhood Dementia' due to how it affects children's memories, causing them to forget most things. Phoebe has lost the ability to say 'mummy', and can now only address her sister Mia by name. 

This is one of the reasons why being able to buy the house is so important; in her current state, it is crucial that Phoebe is surrounded with familiarity in her family, friends and environment. 

A move would disrupt these things drastically, and lead to further regression in her condition. 

You can donate to the fundraiser and support the family HERE.

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