Rainbow Trust Children's Charity

Rainbow Trust Family Support Workers provide emotional and practical support to families that have a child suffering from a life threatening or terminal illness. They provide access to healthcare, education, therapy, welfare support and benefits for these families at the most traumatic time of their lives together with emotional support for the whole family.
Jan 15, 2015

How we help Ben

 

Hi, my name is Ben

Hi, my name is Ben, I am 13 and have Spinal Muscular Atrophy which is a rare neuromuscular disability. This means that the signals from my brain don’t get to the muscles in my arms and legs properly. Consequently I cannot walk and need twenty –four hour support for all of my personal care. I have an electric wheelchair which has a controller that can connect to a computer using Bluetooth, so I can activate and use the cursor on a computer screen with my wheelchair joystick because I can’t use a regular mouse. It also means I can use a PS3 using a special connection, something I couldn’t do otherwise. My wheelchair is my lifeline and I couldn’t do without it.

My family and I have fantastic support from Rainbow Trust and our family support worker called Jayne. She comes around and gives my parents a break by bringing different messy activities for my sister and I to do and enjoy for an hour or two including baking cupcakes and arts and crafts.

Rainbow Trust points us to different charities and activities that they think may be able to help us. This is important because Mum and Dad don’t always have time to look or have the chance to think about them. As well as all of that Rainbow Trust give me and my family some great opportunities. For example, in 2012 I got the pleasure of being asked to race on the Olympic track in a test event in London. We also went to a charity event which was full of celebrities including world boxing star and Rainbow Trust supporter Frank Bruno. My sister and I were asked to give a speech at number 10 Downing Street about our experience of Rainbow Trust which was hosted by Samantha Cameron and it was a proud moment for Mum and Dad. Jayne often helps and supports us when I’m in hospital or ill; this can be a particularly tiring time so having Jayne around is fantastic.

Having Jayne and Rainbow Trust to help is very important because they are brilliant and understand the support and help we need. Thank you all for everything you have done for us!

If I could offer one word that sums up Rainbow Trust it is…. Inspirational.

Having a physical disability can feel very annoying at times because I can’t do what other people can do like football, riding a bike and walking however I don’t let it get in my way, I say it’s annoying because I have grown up with it but it’s an all-round pain in the bottom. I wouldn’t say it makes me feel upset; however it’s incredibly exasperating when we go out on a trip because we have to find out whether it’s accessible and has stuff like toilet facilities. The beach makes me feel particularly frustrated because while my sister goes off and has fun I have nothing to do. Another thing that I get frustrated about is having adults around when I don’t need them, this makes me feel restricted because I can’t mess around with my friends. During the week I have physiotherapy which can get extremely boring and painful, I know I need it though because otherwise I get very stiff.

 

The support Rainbow Trust gives my family is brilliant because they understand how to help me in a practical way, physically and emotionally. The way Rainbow Trust help my family is super. They chat to my parents about anything that is concerning them. My sister has great fun with Jayne and always looks forward to her coming. When I go into hospital I can feel extremely bored then Jayne comes and cheers me up a bit which makes me very happy. If we didn’t have Rainbow Trust I think life would be very different and not in a good way!

Jan 15, 2015

Home sooner than later

The following report from one of our family support workers shows what a difference being able to transport our families to and from hospital appointments makes to them.

My support for Karen and her family sometimes involves transporting the family to and from the hospital for appointments. On this particular day, I was visiting Karen in hospital, she was an inpatient and had been admitted with an infection. Karen is 12 months post heart transplant and has to be monitored during any infection.

 She had been in hospital for a week. Dad informed me that Karen was being discharged that afternoon. He told me that he could phone mum who would have to get Karen’s sister ready before coming to pick them up (mum and sister have cardiomyopathy) and would take a while before they could come to collect them.

 I advised dad that I had two other visits but if he wanted transport home, I could take them on my way to my next visit. Dad was very appreciative and accepted my offer.

 On the journey home, dad was able to discuss concerns about his partner and daughters condition. I enabled him to talk and I listened.

 This shows how Family Support Worker’s can be flexible with the support they can offer families. This support meant that the family were home within half an hour of being discharged instead of hours waiting for hospital transport or Karen’s mother.

 It also allowed mum to relax and not rush to leave the house. Both her and Karen’s sister were able to be at home, waiting for Karen and dad’s long awaited return home

Jan 15, 2015

How your Donations have helped

Your donations have helped us to create new posts for specialist neo natal family support workers.

Please take a few minutes to watch the short film on this link to see how important your donations are to us.

http://rainbowtrust.org.uk/our-impact/serving-families/new-neonatal-family-support-initiative

 

When Charlotte, a single mum of one, discovered she was pregnant, she was so excited and happy but a pre natal scan showed that, tragically, her baby had a heart defect and was not expected to survive birth.

The hospital contacted Rainbow Trust and asked us to support Charlotte at her baby’s birth, to take care of them both and her baby’s end-of-life care. They also asked us to help Charlotte to look after Alfie, her two-year-old son.

When Bryan, our Family Support Worker in Swindon, called Charlotte he discovered she was already in labour. She asked for his support and he went straight to the hospital. She asked him loads of questions and talked about death, dying and funerals – she was very open about it all. Bryan stayed with her and supported her throughout her labour and her baby boy, Charlie, was born without any intervention.

For a 21 year old, the birth of her baby and his imminent death left her reeling between feelings of excitement, relief, fear and grief. Charlotte hoped that he was all right - he looked ‘perfect’, with no signs of being ill. Bryan stayed with her until she settled and agreed to return in the morning.

Sadly, a scan confirmed baby Charlie’s condition and prognosis. Charlotte was very upset and wanted to be with Charlie at the hospice. While she was there, Bryan spent time with Alfie and took him to visit her. He listened to Charlotte as she talked about baby Charlie’s impending death, and together they made funeral plans.

While at the hospice, Charlotte wanted to take Charlie home to “see his home”, the bedroom she had prepared and for them to have some time like a ‘normal family’. Bryan and a hospice nurse accompanied Charlotte and her boys home. This time was very precious to Charlotte. She felt she could pretend that everything was normal.

Charlie lived for 19 days. After he died, Charlotte struggled to come to terms with his death and relied on Bryan greatly for emotional support during the week leading up to Charlie’s funeral.

Bryan continues to support Charlotte and Alfie. He takes them to the cemetery and also encourages Charlotte to visit Rainbow Trust’s local drop-in group for additional support.

 

Bryan supported Charlotte through the most difficult time of her life. He will be there for her as long as she needs him.

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