Supporting Terminally Ill Children

Thank you for enabling Rainbow Trust Family Support Workers like Natalie to help and support families like mine. Natalie is there for all of us and knowing that helps enormously when you have a child with such complex needs as Tlisa has.

Following an emergency caesarean section my new-born daughter, Tlisa, required resuscitation because she was not breathing.

Due to complications with Tlisa’s health we remained in hospital for two years, until recently.

Our lives drastically changed. Nothing is the same anymore. I have gone from being a mum to my eldest daughter, to a full-time nurse and carer for my youngest. I have lived in a hospital room for two years since the day Tlisa was born. In some ways, we have been completely dependent on other people and machinery.

I have to take one day at a time, facing whatever each day it throws at us.

Tlisa’s medical needs have also affected Faith. She had to give up all her things and move in with my parents.

Our family was ripped in different directions. We were lucky to see each other twice a month. My parents’ life also changed drastically. They went from being grandparents to full time guardians of Faith, doing school runs, bath and bedtimes, and all the parental responsibilities that come with looking after a child.

At this time, it was so comforting and reassuring to have Family Support Worker Natalie call in to see me in hospital, checking if I needed anything or to go out for some fresh air and a change of scenery. I needed this emotional support. It is like having that professional friend that you can always call on. Nothing is too big or too small.

Natalie has been helping with a range of things: application forms to secure equipment that Tlisa needed after her discharge, driving me to view our new home, packing ready for the move, and being on hand if my mum needs support with Faith.

There are so many families like mine, trying to cope, trying to keep going alone. Please support Rainbow Trust by donating today.

Roseanne

Mum to Tlisa and Roseanne Faith

PS I was stressed, confused and alone; isolated from family and friends, but Natalie helps us practically and emotionally. She is always willing to go the extra mile to support us in any way we may need.

Links:

• https://www.rainbowtrust.org.uk/

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.

Links:

• What seriously ill children would do if they had a magic wand
• Sponsor a Family Support Worker like Michelle