Phoebe's fight with MPS (childhood dementia)

Hi, my name is Neil and I'm fundraising for Phoebe Rose (6) and her family.

Phoebe Rose is 6 years old and was wrongly diagnosed with Autism. After pushing and pushing for more tests Hollie, Phoebe's mum was told the most devastating news that Phoebe had a terminal condition called Mucopolysaccharidosis (MPS) also known as Sanfilippo Syndrome.

This is a rare degenerative genetic terminal condition that damages the brain and spinal cord. Only 1 in 70,000 children are born with this disease. There are many types of MPS, Phoebe has the Life limiting type, A3.

There is no cure. Children with this disease are given a life expectancy of 10-15 years. The doctors believe that Phoebe is already halfway through her life expectancy for the symptoms she has, meaning she could have as little as 5 years left with us. This cruel disease has a nickname of 'childhood dementia' as they forget and unlearn everything they know.

Phoebe has lost the ability to speak over the last 3 years, she is losing the ability to walk meaning she now uses wheelchairs and hoists. She is also losing the ability to swallow so now needs a completely blended diet. She is on the waiting list for a feeding tube to be inserted within the next few months.

The pain and heartbreak Hollie and her family are going through cannot be described in words, but Hollie wants to raise awareness in the hope that other families can get the right diagnosis earlier by highlighting the symptoms of this cruel disease.

Not only is Hollie processing this Life changing news but she has also found out she is going to lose the only home Phoebe has known. Due to personal reasons, her landlord is having to sell her home. He is devasted but has no choice. Hollie lives with her 2 daughters Phoebe and Mia (6 and 8), and all her happy memories of them growing up are at this house. Hollie is beyond devasted and the thought of losing her house as well as her daughter is more than anyone should have to endure. As she is a full-time carer to Phoebe she has no way of purchasing the house so has contacted the council for their help.

Unfortunately, the council are unable to help with this property, making them soon to be homeless, so they have been placed on a housing list. But because Phoebe will need a downstairs bedroom and wetroom, the council are stating she may need to move several times as they only have 3 adapted properties which are all currently occupied.

Mia still doesn't know the full extent of Phoebe's illness but is heartbroken at having to move house. She has a group of friends she plays out with every day and the neighbours and community on her road are amazing. As she helps care for Phoebe this is essential to allow her to be a normal child. She would be ripped away from all this along with her school and gym club she attends 14hrs a week, as the council would have to move them out of the area to find them a house.

For Hollie the thought of losing her home and moving to somewhere no one knows them, her eldest losing her friends, Hollie losing her support network along with her daughter has broken her. Phoebe also needs to be surrounded by things and people familiar to her due to dementia. There is a big fear of the disease progressing more rapidly if all the familiar things for her to latch on to are taken away.

Thank you so much for reading, and if you can make a small donation it would be much appreciated. Please help Hollie spend these last few years making happy memories with her daughters by raising the funds to buy their family home and adapt it for Phoebes needs. It would mean the world to her.

Please, please, please help

Kerry & Neil