Terminally ill children in isolation need you

My son Mohammed is five years old and was born with a rare genetic condition which affects his liver, intestines and immune system.

In the future he will need a liver transplant.

Mohammed also has a severe autism diagnosis, is non-verbal and has no sense of danger. We have to monitor him 24/7 to ensure that he does not pull out his Hickman line and stays safe.

Life is very difficult. I do struggle sometimes.

Family Support Worker Georgia started supporting us in 2023. Her support has been essential for the whole family, helping us to navigate the challenges of caring for Mohammed. She has helped me with paperwork when applying for benefits and Mohammed’s disability badge, helps with shopping, school pick up and running errands; she supports me by monitoring Mohammed and she helps me to understand medical jargon. This practical support alleviates some of my feelings of being overwhelmed while allowing me to have some respite and to focus on spending time with my family.

When Mohammed catches an infection, it often means an urgent trip to hospital, sometimes for an extended period of time. These are usually unexpected and Georgia supports us by going to our house to collect the essential things we need and brings them to the hospital. It is one less thing to think about, and it helps so much.

Georgia will also sit with me in hospital, either to chat about how I am coping or to give us a break by spending time with Mohammed. Knowing someone is there to support us, listen to our worries and ease some of my stress is such a relief.

If we have to rush to the hospital with Mohammed, it is also a relief to know that Georgia will pick Amal, our seven-year-old daughter, up from school and talk to her about how she is feeling. Amal struggles when Mohammed is in hospital as me and her dad are not around as much but having Georgia’s support has really helped give Amal the one-to-one time she needs.

Amal also attends some of the Rainbow Trust sibling days, allowing her to connect with other children going through similar experiences and to create a support network outside the home.

The time Georgia spends with Amal and Mohammed is very important to me as I can have some respite, time to myself and the chance to do jobs around the house that I cannot get done while monitoring Mohammed.

Because of Mohammed’s complex medical needs and the likelihood of him needing a liver transplant, our future remains uncertain. However, I know that whenever I need support or feel overwhelmed, I can rely on Georgia.

Thanks to donations from supporters like you, my family was able to receive this support we desperately needed to cope. Thank you.

Links:

• Sponsor a Family Support Worker like Georgia today
• Find out more about Rainbow Trust