Emily's Story

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Family Support Worker Michelle talks to us about starting to support Emily’s family in June 2022.

Emily is 12 and has Demyelinating neuropathy, a neurological disorder characterised by progressive weakness, with reduced function of legs and arms.

Emily also has severe scoliosis, an abnormal curvature of the spine, that is causing her internal organs to be squashed, her ribs are rubbing on her pelvic bone and her lung function is progressively decreasing. Her parents, Ben and Laura, have recently been told her scoliosis cannot be operated on. Emily’s condition is so severe that her family has been told she could just stop breathing or, if she catches a cold, she will need to be ventilated and the outcome may not be good for her.

“Emily lives in constant pain but she never complains. She tries to put a smile on her face and tells everybody she is fine.” - Mum, Laura

Ben and Laura also have two other children: Oliver, seven, and Caitlin, three. I help the family in many ways. I pick Oliver up from school so Laura can attend hospital appointments with Emily and Caitlin is now happy to play and have fun with me without mum being around.

Oliver is going through a difficult time at school. I have recently trained in drawing and talking therapy and am discussing being able to deliver it weekly in school. This time will encourage Oliver to share his feelings and to explore solutions and ways to manage his emotions.

A few weeks ago we went to the park with my colleague Matt and played football. When we got home Laura said she couldn’t believe how much she had got done in the time the children were with us. The following week she sent me a text:

“Oliver had been lacking confidence in his football but after his time with Matt he played really well for his team and got Parents Man of the Match and Managers Man of the Match. This has really boosted his confidence.” Mum, Laura

I know that for Ben and Laura it is really hard to see Emily in such pain and having to deal with her condition. As a Family Support Worker I try to help in whichever way I can, trying to do what is of most value and assistance to the family so they can share their time together.

“My sister gets very excited when Michelle is coming. She keeps opening the door to see if she can see her car. It makes me happy when Caitlin is happy because she is my best friend.” - Emily

A message from Laura:

The support my family has received from Rainbow Trust is outstanding. Our Family Support Worker 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.

She makes her visits fun and manages to keep a very active three-year-old busy. My youngest daughter, Caitlin, sometimes finds it hard to leave me. Michelle manages to distract her and keep her busy while I’m gone.

Michelle picks my son up from school when I need to attend an appointment. All my children love their time with Michelle. She is a fun, caring person and 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.

There have been several occasions when I have needed someone to talk to and I have called or messaged Michelle and she is always more than happy to chat.

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.

Our family cannot thank Michelle enough for all the support she has provided and continues to provide. Her care is just outstanding.

Thank you.


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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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