I’m Vickey, mum to Ollie and Lisi and I’m married to Adrian. Lisi is the most kind, caring and loving four-year-old you will meet. Ollie is a cheeky, mischievous seven-year- old; he loves trains, getting messy and making people laugh. Ollie has an ultra- rare genetic condition that means any muscle in his body can become paralysed for anything from minutes to weeks. This can affect his arm and leg muscles and also those that control his eyes, breathing and heart. Ollie can’t walk or talk, he is fed by a tube and he needs me to dress him. But his smile will melt your heart and his personality fills a room. Lisi at the tender age of four chooses to help hoist Ollie, help with his medicine and more.
Ollie needs constant supervision and can never be left alone. He has no awareness of danger, a very high pain threshold and will eat anything. He can stop breathing at any time, day or night. He can’t have monitors to help, because he will pull them off. We put him to bed and pray that tonight won’t be the night that he stops breathing and doesn’t start again.
Like so many others, we get no support to help us care for Ollie.
Support would mean that we can simply be mum and dad to Ollie and Lisi rather than having to constantly think about what medications are needed or when the next feed is due or when he last had a wee. In the holidays it would mean that Lisi can play and have her childhood back.
And after seven years, Adrian and I would not have to choose between sleep or our child surviving. It would reduce the risk of Adrian and I becoming yet another statistic among the thousands of families with a disabled child that break down. We would know Ollie will be safe and could give Ollie and Lisi the best possible life experiences.
Last year, we were granted 24 nights a year of respite but before we could use Ollie became too complex for our local respite unit. Let that sink in for a minute, he’s ‘too complex’ for others yet we are left to cope on our own with no support.
I know that our story is not unique. That’s why together with other families like mine, the Disabled Children’s Partnership and the Sun newspaper, we’re asking you to ‘Give it Back’ and plug the £434 million funding gap for care services for disabled children.
That’s £1.2 million a day worth of support that disabled children like Ollie are missing out on. Please give it back.
Vickey, Adrian, Ollie and Lisi from Southampton