By Michelle Watts | Family Support Worker
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 this text message: “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.”
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.
It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.
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