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. <\/p>\n\n\n\n
We spoke with Mikey’s mum Chevonne about the cost of caring.<\/p>\n\n\n\n
“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.”<\/p>\n\n\n\n
\nMy 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. <\/p>\n<\/blockquote>\n\n\n\n
“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.” <\/p>\n\n\n\n
How Family Fund helped<\/h2>\n\n\n\n
“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.” <\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"
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 […]<\/p>\n","protected":false},"author":3,"featured_media":17929,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_oasis_is_in_workflow":0,"_oasis_original":0,"_oasis_task_priority":"","_mixd_wp_review_post_reminders":[],"_mixd_wp_review_date":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[7],"class_list":["post-17928","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-family-stories"],"acf":[],"yoast_head":"\n
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