Hollie Self's daughter Phoebe has been diagnosed with a rare genetic condition called Sanfilippo syndrome
The mum of a six-year-old girl dying from a cruel illness known as ' childhood dementia ' fears they may be made homeless. Hollie Self's daughter Phoebe has been told she has just five years to live after being diagnosed with a rare genetic condition called Sanfilippo syndrome.
The family are currently on the waiting list with Stockport council for an adapted home. But Hollie fears it's unlikely a suitable property will become available before their moving date. "I don't hold anything against , 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.
Hollie says she also wants to raise awareness of Sanfilippo syndrome to 'stop other families going through this'. Phoebe was initially diagnosed with autism, but Hollie says she knew 'in her gut' that something 'wasn't quite right'. "But she's completely changed now. She doesn't really smile any more, she uses the wheelchair most of the time.
Asked what she would say to other parents in a similar situation, Hollie said: "Listen to your gut. If your child has a diagnosis with autism but you think it could be something more, just keep pushing. It's a simple urine sample to test for Sanfilippo syndome."
Childhood Dementia Sanfilippo Syndrome Rare Genetic Condition Homelessness Mobility Loss Feeding Tube
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