OLLIE'S LETTER
My son can’t walk or talk and can stop breathing at any time of the day or night – please give us the support we deserve to care for him
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VICKEY Kowal's seven-year-old son Ollie loves trains and messy play - but he also has a rare condition which means his muscles, including his heart, can become paralysed at any moment.
They are just one of the families effected by a £434 million cut in social care provision for disabled people, and are backing The Sun's campaign for the Government to Give It Back.
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Vickey's family life would be immeasurably easier if they received the right support.
They have never received respite care and have no help overnight, meaning it's up to Vickey and her husband Adrian to watch over Ollie.
Here, Vickey details the difficulties her family faces on a daily basis in an open letter to the Government asking for more funding.
We are calling on our loyal readers to .
Is your family affected by the cuts to funding? Tell us your story. Email: [email protected]
"Dear Chancellor,
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.
WHY 'GIVE IT BACK' NEEDS YOUR HELP
- The Sun launches its Give It Back campaign to demand parents of disabled kids get the money and support they’re owed
- I pray my son will live through each night and worry what will happen to him if I die – we desperately need more funding
- Parents of disabled children battling suicidal thoughts due to lack of funding and fear they can’t care for their kids safely
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A constant fear
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.
GIVE IT BACK
Why we demand the Government helps families with disabled kids:
Disabled children and their families are desperately struggling because of a lack of support.
We want the Government to reinstate the £434m of funding it has cut from early intervention services - such as respite care and vital equipment.
It is time for the Government to Give It Back.
The number of disabled children in the UK has risen to nearly 1 million over the past 10 years - up by a third.
But funding and support has been cut.
Families with some of the most vulnerable children in the country are struggling to cope.
That’s why we’re working with the Disabled Children’s Partnership to help them.
Together we can make a real difference and hugely improve the lives of disabled children and their families.
We want you to share your stories, email us on giveit[email protected]
Please to put pressure on the Government to act now.
'Give my daughter her childhood back'
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.
Respite denied
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.
WHERE TO GET HELP
, 0808 808 3555
(IPSEA) - for specialist legal advice
- a charity that provides help with equipment
- to understand your child's entitlements
- great advice for brothers and sisters of a disabled child
MOST READ IN NEWS
That’s why together with other families like mine and the Disabled Children’s Partnership, a coalition of more than 60 charities, 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.
Best wishes
Vickey, Adrian, Ollie and Lisi from Southampton"
Support for families with disabled kids has been cut - it's time to Give It Back
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