Emily's Story

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Emily is 13 and has Demyelinating neuropathy, a neurological disorder characterised by progressive weakness, with reduced function of legs and arms. She lives in constant pain and is cared for by her mother, Laura. Laura and Ben, Emily’s father, have two other children: Oliver, nine, and Caitlyn, four.

Laura was 18 when Emily was born prematurely and spent three months in the neonatal ward in hospital. Diagnosed with Demyelinating neuropathy aged five, Emily reached her milestones, albeit slowly, only to lose them again. In addition, Emily suffers from inoperable scoliosis and due to her poor health if she were to catch a simple cold she would need to be ventilated.

Watching Emily deteriorate over the years has been incredibly tough.

“She learnt to sit, walk and this condition takes it all away. Because it’s progressive her nerves started to break down and take everything away. First it was her walking, then her weight bearing and now she can’t sit unaided. It has taken absolutely everything away.”

The whole family feels isolated and Rainbow Trust Family Support Worker Michelle has made a huge difference, particularly helping Emily’s siblings Oliver and Caitlin. She collects Oliver from school so Laura can attend hospital appointments with Emily and plays with Caitlin.

“As a parent with a child with a life limiting condition, in the past, I have felt very alone. Since having Michelle’s support in place I no longer feel that way.”

Michelle trained in drawing and talking therapy specifically to help Oliver express his emotions and manage a difficult time at school when he was having friendship problems and worrying about Emily’s illness.

Previously he had refused to go to school and refused to do English activities. Thanks to Michelle delivering weekly therapy sessions and helping him with English, Oliver now loves school. Michelle has also embraced Oliver’s love of football by arranging for him to play for 15 minutes regularly at the end of the school day, which has boosted his confidence. She has also introduced him to another sibling supported by Rainbow Trust and they play football together.

Laura says

“Michelle has gone above and beyond for our family. She has provided us with different things like sibling support, emotional support and help when I have needed to get Emily to appointments.”
“Without her support things would be even more difficult than they already are. Michelle is always very easy to talk to and I now feel when things become difficult and I’m feeling alone I can always let my emotions out and talk about my feelings. She will sit and listen and will always have suggestions on how I can manage things”
“Our family cannot thank Michelle enough for all the support she has provided and continues to provide. Her care is just outstanding.” Please donate today to help us support more families like Emily’s."

Please donate today to help us support more families like Emily's.

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Continued support for a family for as long as they need us

Continued support for a family for as long as they need us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.

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