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.
May 9, 2016

Elizabeth's Teenage Wish

My job is most difficult when a child dies, or when a family are told there is no further treatment to help their child. It makes me sad seeing families break up due to the stress of the situation, but I know that the support I can give will help them to make the most of their last days, weeks or months together.

A few years ago I supported a 13 year old girl, Elizabeth, who was suffering from terminal cancer. She was the same age as my daughter, so it really hit home personally to see what Elizabeth was going through.

As Elizabeth got sicker, couldn’t attend school any more, and she quickly lost touch with a lot of her friends. The ones who did visit her at home or in hospital, she felt she had nothing in common with any more. She couldn’t join in with conversations about trips to the cinema or into town on a saturday with friends. She became very withdrawn and was really very lonely.

My support for Elizabeth enabled her to be a proper teenager and experience all the things she should be doing. We would go to the cinema, go clothes shopping and get our nails done together. When her friends came to visit, instead of sitting awkwardly she could now join in and show them what she had been buying in town, saying she went with her 'best friend'.

Towards the end of her life, Elizabeth opened up to me about the fears she had about dying, but was most worried about leaving her mother and how devastated she would be. She told me she would like to leave presents for all the members of her family to be remembered by, so during the last few weeks of her life we spent time shopping to collect special presents for each family member. She made a Build a-Bear for her mother with a personal, tape recorded message of her voice inside, and we spent time hand-painting pottery and making jewellery for her grandma and aunties.

After Elizabeth died, her mother told me that I had allowed Elizabeth to experience a real teenage life, although a very short one. It comforted her to know that Elizabeth had managed to life as normal a life as possible, almost to the very end, and that she hadn’t missed out on those seemingly simple experiences that most of us take for granted.

Elizabeth’s support was made possible by kind donations to Rainbow Trust, without which I couldn’t provide this wonderful support to children like Elizabeth. I am grateful to everyone that has enabled me to do such a difficult but rewarding job. 

May 4, 2016

Lily-Rose and her brother, Baktash

Lily-Rose plays with Shirley (Southern Daily Echo)
Lily-Rose plays with Shirley (Southern Daily Echo)

As my son was dying, I needed help to support his three-year-old sister...

Baktash was eight years old when he was diagnosed with a brain tumour. Baktash had radiotherapy, as his mum, Zakia, recalls, “They told me that as long as the tumour didn’t grow he would lead a normal life”.

Six years passed and with Baktash doing well, Zakia had a daughter, Lily-Rose. However, one day Baktash had an operation on a second tumour and was rushed back to hospital soon afterwards. Zakia remembers the day vividly. “He had a CT scan and at 1am the doctor came and simply said, ‘His tumour is really bad, he’s going to die’. I was on my own with Baktash all night and I just cried.”

Zakia remembers the impact on her family. “At the time I just wanted to spend as much precious time as I could with Baktash, I wasn’t able to focus on Lily. She was struggling as I wasn’t able to do anything with her.”

Zakia was referred to Rainbow Trust Family Support Worker, Shirley. “Lily was much happier after Shirley started. Before that her life consisted of hospitals or being stuck at home. Shirley took her to places like Rainbow Trust’s Treasure Chest play room; she’s so happy when she knows she’s going there.”

Shirley was also able to help Lily cope with Baktash’s illness. This relationship proved especially important, when Baktash died. Zakia says, “I couldn’t leave Baktash alone, but Lily was upset, so I called Shirley”. When Shirley arrived the family asked her to speak with Lily and explain to her what had happened, since they had such a strong bond.

Shirley still takes Lily to places like the Treasure Chest. She is also there for Zakia when she needs to talk about Baktash, and she will be there for the whole family, for as long as they need her. 

May 4, 2016

Me and My Miracle Baby

Miracle with Diana in hospital
Miracle with Diana in hospital

Me and My Miracle Baby

When I was 20 weeks pregnant, the doctors told me there was something wrong with my baby. They sent me to the hospital where they checked my baby and found that one of the arteries in her heart was not fully developed.

Every month they checked my baby girl and at 37 weeks they decided it was time and induced me to give my baby the best chance of survival. Hours later her heart rate dropped again and I was prepared for surgery but my brave little fighter stabilised – her heart rate became more regular and I was able to deliver her naturally. I was so happy and grateful when she was born, I heard her cry and I believed she was going to be alright. Her little heart was working so much better than doctors had expected so they had time to think about what they needed to do next.

I named her Miracle because, against all the odds, she had survived.

Miracle was put on oxygen and when she was just two weeks old, had her first open heart surgery to close the artery that hadn’t closed while she was in my womb. I waited with her  brothers, Stephan and Ezekiel, and sister, Sherray, for five hours and when Miracle came out of theatre, doctors said she had done really well. She will need surgery later in life but for now, she is okay. She has sleep apnoea at night so is on oxygen to ensure she gets the oxygen she needs. I have to take her off the oxygen to change her so she is having some time breathing on her own but I keep her on it 24/7 to be safe.

Soon after Miracle’s operation weI was referred to Diana, our Rainbow trust Cardiac Support Worker, for help. It was a huge handful taking care of three children and a sick baby and I was in need of help. Diana started taking me to the hospital when Miracle had appointments.

Francesco, one of Rainbow Trust’s Sibling Support Workers, started supporting Miracle’s brothers and sister too. When I am at home, Diana or Francesco take Sherray to the park and Ezekiel to nursery – it makes a big difference having that kind of help, without it I think my other children would have suffered more. It means I can devote all my time to Miracle and not feel guilty for it as I know my other children are safe and getting one-on-one attention. I feel bad not being able to give them all the attention they need but Miracle needs me constantly. It also means the older ones can still go to nursery and the park and do the things they want to so they feel less affected by Miracle’s condition.

I am still feeding Miracle every three hours and that can take up to 90 minutes. Having Diana there to help me makes such a difference to my day. I am so grateful for her support.

My children love Diana and Francesco and I trust them with my children. They are so happy to see them because they know they will devote their time and attention to them and them alone– they really love having Diana and Francesco around them. Without help, I couldn’t go shopping as I can’t push a trolley, a buggy and hold onto Ezekiel’s hand so when Diana comes, she looks after the children and I go food shopping. I appreciate her help so much and I don’t know what I would do without her and Rainbow Trust.

Stephanie

 
   

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