The cost of caring for a child with a highly complex, undiagnosed condition

Chevonne lives in Fareham in Hampshire with partner George and three children. Their youngest Mikey, aged 12, has a highly complex, undiagnosed condition and is in worldwide health studies. Mikey needs 24/7 care with two people at all times, one of whom must be a nurse. He needs a tracheostomy and a ventilator, a Central Line for feeding and uses a wheelchair.

We spoke with Mikey’s mum Chevonne about the cost of caring.

“I worked before Mikey was born but now I’m his full-time carer. I would love to work just for my own sanity, but he hasn’t been in school since last June so it’s all day and night.”

My partner had to give up work to help me care for Mikey because we just can’t get nurses. I’ve just done three night shifts in a row because he needs someone awake. Mikey has so much equipment just to keep him alive… our electric bill is about £600 a month. We just can’t keep up with it – I owe £3000 in arrears. 

“His bedroom looks like a hospital room. With a child like Mikey, we get his Disability Living Allowance and I get carers [allowance], but there’s no funding for any extra. If he didn’t have the medical equipment, especially the ventilator because that does his breathing for him, he wouldn’t be here.”  

How Family Fund helped

“When he was little and left hospital, we had to carry oxygen cylinders with us, at all times, and heavy bags. Family Fund gave us money towards a suitable push chair. With his stoma bag, we change his bedding most days because of leaks, so we asked for spare bedding. Another time we got some clothes which was a big help because of stains from his stoma bag. And obviously you’ve got to be careful with the tracky [tracheostomy], so you have to cut them to fit over his head.”