With an uncertain future ahead, Sonia, Mohammed’s mum, tells us how Family Support Worker Georgia helps the family with the challenges of caring for a seriously ill child.
My son Mohammed is five years old and was born with a rare genetic condition called trichohepatoenteric syndrome which affects his liver, intestines and immune system.
Mohammed catches infections easily and often, sometimes leading to long hospital stays. He needs a Hickman line, an intravenous catheter, for nutrition; eats very little by mouth, tires easily, and experiences flare-ups of his condition, which can be life-threatening.
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.
My husband works long hours, and I care for Mohammed full time. Trying to attend to Mohammed’s needs and also be there for our three other children is demanding and incredibly overwhelming.
In May 2023, a local community nurse referred us to Rainbow Trust and we were paired with Family Support Worker Georgia from the Greater Manchester Care team.
Georgia’s support has been essential for the whole family, helping us to navigate the challenges of caring for Mohammed, allowing me to have some much-needed respite. As our two other sons are older, Georgia focuses her support on Amal, our seven-year-old daughter, ensuring she gets the quality time she needs.
Georgia has helped me with paperwork when applying for benefits and Mohammed’s disability badge, helps me 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.
Due to his autism Mohammed struggles to connect with people but has developed a strong bond with Georgia. He is generally uncomfortable with people outside his immediate family; however, he gives Georgia a big hug when he sees her. This means so much to me.
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 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 the Greater Manchester Care team’s sibling days, allowing her to connect with other children going through similar experiences and to create a support network outside the home.
Most recently they visited a farm, she fed the animals and went on a tractor ride to see the donkeys – she absolutely loved it. Georgia often takes Mohammed and Amal for days out to give them time to be like any other children and so neither feels overlooked.
They get so excited to see her and love spending time with her. These days out give them a chance to have some fun and be in a non-medical environment. They go to the library, aquarium, farm, museum and even the supermarket, where Mohammed loves people watching and sensory activities, like smelling candles.
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. I often feel overwhelmed balancing Mohammed’s needs with those of my other children. On the occasions when Georgia takes Mohammed out by himself, I am able to spend quality time with Amal, while knowing that Mohammed is safe and happy.
Because of Mohammed’s complex medical needs and the likelihood of him needing a liver transplant, our future remains uncertain. However, he recently started at a special educational needs school and is thriving.
Alongside this, I know that whenever I need support or feel overwhelmed, I can rely on Georgia. She has supported and helped our family so much, we would struggle without her.
With your help Family Support Workers like Georgia can make the challenges that families living with childhood illness face that bit more manageable.
Please donate today to help us support more seriously ill children and their families just like Mohammed's.
