Living with serious illness can be isolating for all the family. Parents and children often tell us that their friends and wider family do not understand what they are dealing with. Much of the practical and emotional support given by Family Support Workers is designed to tackle these feelings of loneliness and isolation.
Gene is 11 and has Glomerulocystic kidney disease, renal anaemia and a serious blood condition hyperkalaemia. Gene takes 30 tablets a day to keep well. He is an only child with no brothers and sisters for company or support.
Gene and his mum have the same disease. His mum has had a cardiac arrest and has been resuscitated many times. At Christmas in 2019, she was found collapsed on the bathroom floor and was temporarily blind due to fluid on her brain. As you can imagine, it is really worrying for Gene to see his mum like this with the added complication of knowing that he has the same disease.
They are a low-income family, and Gene’s dad works six days a week for long hours. His mum has been on dialysis for most of Gene’s life three times a week for five hours at a time, so she is often not at home. Gene goes from school straight to his grandma’s house - luckily, she lives next door and this has been invaluable when his mum has had emergencies.
Gene’s medication has caused the onset of early puberty, and this along with other medical issues is a huge amount for an 11-year-old boy to deal with. Whilst he appears well, and has the maturity to know how to manage his medication, the complexity of emotions often leaves him feeling very isolated. It has manifested itself through behavioural issues at school.
Gene also has a diagnosis of auditory hallucinations and hears voices in his head. Regular meetups with Family Support Manager Charlotte give Gene an outlet and help ease isolation and loneliness. His mum says that the sessions help him so much because when he goes out with Charlotte, he is so busy it helps him to escape hearing the voices in his head. For each hourly session, Gene is completely free to decide what he wants to do, and where their adventures may take them!
Charlotte said: "Gene loves the spontaneity of our adventures. He has me climbing high towers, going on zip wires, playing football, going on our bikes, exploring the woods, making and using rope swings and building dens. He tells me every time I complain about being old that it is mind over matter and that he doesn't treat me as if I am old, so I have no excuses.
"He is a lovely warm and caring young man who looks well and so people can often forget what his lived experience is. The reason he is so well is due to the loving care and attention of his parents ensuring that he takes his medication, never misses his consultant appointments and still gets to have fun."