Help Oliver to stay with his brothers

When Oliver Rooney’s four brothers stay with their dad for the weekend they are heartbroken to leave him behind, but the eight-year-old with profound and complex needs is forced to miss out because he doesn’t have a specialist bed to keep him out of danger.

Oliver has Wolf Hirschhorn Syndrome, an extremely rare chromosomal disorder which means he has physical and learning delays and has absolutely no awareness of danger, so he needs to be constantly supervised.

It is estimated WHS occurs in one in 50,000 births and it was only began to be investigated in the 1960s. The most distinctive feature of WHS is the typical facial appearance. Individuals with WHS usually have widening and prominence of the area located at the top of the nose between the eyebrows

A specialist high-sided bed protects Oliver through the night at his Bramley home, but without a specialist travel version it’s not safe for him to join his twin Jak, Thomas, nine, Joseph, 11 and Samuel, 12, to stay with their dad, John, or enjoy sleepovers at their grandparents or holidays.

Now Newlife the Charity for Disabled Children is urgently calling on the local community to help them raise £2,510 to fund the specialist travel bed for Oliver – and an anonymous donor has already pledged to match all donations Newlife receives for this pound for pound.

Mum Elizabeth Mcomish-Rooney said: “It’s heart-breaking that Oliver has to miss out on so much, but at night time he’s often awake for hours in the middle of the night. Without a specialist bed with high sides he would be in constant danger.

“Oliver is like a one year old in an eight-year-old’s body. Everything around him has to be safety proofed all the time. He has no understanding of what’s dangerous, so there are so ornaments or lamps in our home and the TV is far out of reach, high up on a wall. It’s exhausting to always be thinking a step ahead and I can’t take my eyes off him for a moment.

“Even going outside means Oliver has to use a wheelchair because his joints are hyper mobile and he gets very tired very easily and he’ll just decide to sit down anywhere, even the middle of the road, and not move.

“When he was younger we could go away for a break and use a travel cot, but he’s far too big now. We have even tried strapping in him in to a reclined buggy so he can stay at his dad’s for the weekend, but that’s not safe for him. A specialist bed will mean Oliver and his brothers can do everything together, rather than him having to stay at home with me or at my parent’s home whilst I visit other family, which I haven’t been able to do in four years. It’s so important as it will give Oliver as normal a life as possible and mean so much to his brothers to have him with them. It also means I can sleep and relax knowing he is safe away from home.”

Senior Manager for Newlife’s Child & Family Team, Carrick Brown, said: “Every child deserves the chance to be included in everything family life has to offer. Missing out on so much due to the simple lack of equipment is heart-breaking.

“Unfortunately, as much as we want to help Oliver and his family, we simply don’t have the funds to buy the equipment right now. We are desperately appealing to the local community for help to raise the money so Oliver can have the specialist travel bed he urgently needs.

“Oliver is just one of 22 children in Yorkshire and the Humber on our waiting list and in desperate need of specialist disability equipment costing a total of £22,038, so every penny we raise is so vital. Money raised above the amount needed for Oliver’s bed will be used to help other disabled and terminally ill children in need.”

Last month The Yorkshire Post highlighted the case of little Esmae Robinson from Selby.

The five year old who was born 12 weeks early was left with cerebral palsy after contracting meningitis and septicaemia when she was just a few days old.

Her family urgently needed to raise £1,200 to buy a specialist seat to support her so she doesn’t choke while being cared for her at her grandmother’s home.

And thanks to generous readers of The Yorkshire Post, the total was raised with in a matter of days, her new chair has been purchased and she is awaiting delivery any day now.

Anyone able to help Oliver should urgently contact Newlife on 01543 431 444, visit the website at www.newlife.support/HelpOliver or email [email protected]. You can also text NEWLIFE OLIVER to 70500 to give £10 to Oliver’s appeal. Newlife will receive 100 per cent of your donation. Texts cost £10 plus 1 message at your standard network rate. Always get the bill- payer’s permission.