Support Families Who Have a Terminally Ill Child

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 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/

One morning in February 2021 five-year-old Kahmari woke up unable to move his arms. He was in a lot of pain so his mum, Krystal, took him to the doctor, who prescribed painkillers. The next day Kahmari was worse. Krystal was very worried so took him back to the doctor who referred him to the local children’s hospital.

This appointment was not until the following week and by the weekend Kahmari was feeling so unwell that Krystal decided to take him to emergency. After several tests, the doctors gave Krystal the devastating news that Kahmari had Acute Lymphoblastic Leukaemia. Krystal said: “I could really not comprehend what was happening. I couldn’t believe what I was hearing. I felt really upset, I was angry, I was so very sad”.

Kahmari was in hospital for two weeks. His first course of chemotherapy treatment and steroids was for six weeks; this treatment made him feel very ill and he was very upset.

Krystal is a single parent and she doesn’t have a wide network of support. This scary situation was making her feel isolated and very tired and stressed, coping alone with the pressure and worry of Kahmari’s diagnosis.

Kahmari was referred to Rainbow Trust and the initial assessment with Family Support Worker Wendy was completed over the phone due to the ongoing restrictions of the pandemic at the time.

In March 2021 Wendy started to support them at the hospital. Wendy worked on building a bond with Kahmari to eventually allow much-needed respite for Krystal. Kahmari found it hard to pronounce Wendy’s name so she took the new name of ‘Wenshy’.

Krystal said: “Kahmari would ask everyone at the hospital if Wenshy was there, he would call out Wendy’s name to any lady with brown hair and I had to count down the days until he next saw her”.

In April 2021 Wendy started supporting the family at home too. Wendy takes Kahmari to the park to ride his bike and play football, or they do art and crafts. But what Kahmari likes most is when Wendy helps him reach the next level on his Nintendo game. This fun time with Wendy provides respite to Kahmari’s mum and also an outlet and emotional support for him, as he navigates and understands what it means to go through treatment and live with cancer.

On top of the challenge of dealing with her son’s serious condition, and to make things worse, Krystal lost her job due to being in hospital all the time with Kahmari. Like many people in this situation Krystal is anxious about money. Wendy provides emotional support to Krystal and also helps by signposting her to information and financial benefits to which she might be entitled.

Although Kahmari’s treatment will not finish for another two years, Krystal is feeling much more positive and has started an Occupational Therapy course at university. Wendy will continue to support the family until they feel able to cope on their own.

Krystal said: “I just want to say thank you to Wendy for putting in the extra effort during this difficult time in our lives. Just having Wendy around playing with Kahmari and keeping him entertained whilst I have a break has really helped. I couldn’t imagine life without her. Her positive attitude has helped us to continue to feel motivated”.

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 Wendy