A six-year-old boy from Cheshire who has an inoperable brain tumour has been given a specialist buggy by a children’s charity to ensure he can attend vital hospital appointments and go outside with his family.
Claire and Neil McKelvey, from Ellesmere Port, were given the buggy by Newlife the Charity for Disabled Children for their son Max. They have now urged people to support the charity so it can help other families in crisis as it is continuing to provide vital equipment to disabled and terminally ill children across the UK but, without urgent funding from the government, its services risk grinding to a halt.
Max was just five-months-old when he was diagnosed with a brain tumour the size of a satsuma – and he has already undergone seven rounds of surgery as well as chemotherapy to stabilise his condition. He is now taking a new drug on compassionate use to shrink the mass and hopefully keep it from growing.
Now registered blind, Max is often exhausted and can’t walk far as he has poor balance and co-ordination which means he falls frequently, so a specialist buggy with a five point harness is a vital for him to safely go anywhere – even his own garden to enjoy fresh air and sunshine.
Mum Claire said: “Max is having treatment at Great Ormond Street Hospital and needs MRI scans every three months to keep track of the tumour and associated cysts. Because of his condition and new treatments Max has put on a lot of weight in a short space of time relating to Endocrine issues – he now weighs more than 33 kilos – so the buggy we had from our local Wheelchair Services a few years ago is no longer fit for purpose, but they couldn’t provide anything suitable to replace it with.
“We are shielding Max under lockdown, but we still need to take him for hospital appointments. We also need to take Max out with his two-year-old sister Ava to quiet spots for some fresh air and exercise each day. Max becomes quite anxious and agitated if he can’t go outside, he hates being in the same surroundings, but it was impossible as we were worried about him sustaining an injury.
“The buggy from Newlife is a lifeline for us and it does everything we need it to do. It’s made a massive difference to our life. It’s really comfortable and supportive for Max and it reclines so he can sleep when he needs to. He can also get in and out of it easily by himself, which is really important as we can no longer lift him. This gives him a little bit of independence too, which is such a big thing to us. We want to give Max as much as we possibly can.
“Newlife has been a godsend – when your child needs specialist equipment it’s very expensive and you don’t always know where to start to get help. Without Newlife we’d be trapped.”
Newlife, which is in its 30th year, is now operating in a much reduced capacity and has temporarily closed all its stores in line with national government advice. It has launched a £72,000 national fundraising drive to ensure its nurse helpline and emergency equipment services can cope with demand over coming weeks.
The charity’s Consultant Nurse Karen Dobson said: “Many of the disabled children who need our help are at most risk of the effects of COVID-19. Whether it’s because they have an underlying health condition or because they cannot access already stretched essential health and social care services, it’s vital that they get the equipment and support they need to keep them safe – they need our help now more than ever.”
Among its services, Newlife provides the UK’s only emergency equipment response service, aiming to get equipment to children who need it the most anywhere in the UK within 72 hours. It has issued twice as many emergency loans of specialist equipment to families with disabled and terminally ill children in the first seven weeks since lockdown began and is now critically short of loan equipment and without the funds to purchase extra stock.
Newlife also provides grants of equipment including specialist beds, seats, buggies and car seats to children, often when they are facing delays or difficulties accessing the equipment they need through statutory services.
The charity is appealing to its loyal supporters to find other ways of pledging support during this unprecedented time – perhaps by donating money they would usually spend on their commute or frozen gym memberships while having to work from home. To donate click here.