As for many other children with life-limiting conditions and their families, lockdown has presented some huge challenges for Josselin and her family. Mum, Karen, describes how they are coping in these incredibly difficult times.
“We have now been home for almost six weeks. Josselin is on the Government shielding list and will be at home for a long time yet. She has two brothers, Dalton (8 years old) and Alex (16 years old), who are also at home.
Lockdown is incredibly hard on everybody but extra challenging for Josselin. She is deaf, blind and severely autistic. I can’t communicate to her why the school bus doesn’t arrive in the morning, why she can’t go to her usual activities and see all her familiar people. She barely knows the difference between day and night at the moment. Her behaviour can be very difficult to manage, and her frustrations have caused her to harm me and herself. I have set up a sensory shed, her hot tub and various play areas and she also has a trike that she can go on in the driveway, but this is no replacement for her usual routine.
Josselin uses a ventilator at night and is tube fed. She is fully wheelchair bound and reliant for all aspects of her care.
It takes more than one person to care for a child like Josselin but currently, I am doing this alone. We do have NHS nurses in for three night shifts a week; this is my only break from 24/7 care.
Not only am I worried about COVID-19 like we all are, but I am also worried about Josselin getting the virus due to her complex needs - would she even survive? I'm worried about the effects on her spine and bone conditions from not receiving her usual therapies. When will she be able to access her necessary medical appointment that we usually have weekly? How much will her development suffer? We have no idea how long this will go on for. Having a disabled child can be isolating and lonely at the best of times but this is an incredibly difficult time right now.”