A mum of twins who have complex needs has issued a rallying call for people to support a disabled children’s charity that has loaned her specialist equipment to give her son a safe place to sleep so they can all better cope during the pandemic. Kelli Martin turned to Newlife the Charity for Disabled Children’s Emergency Equipment Loan service in desperation to keep her family safe through the night.
She has now pleaded with people to support the charity’s Covid-19 Response Appeal launched to help it cope with increased demand from other families in crisis and is contacting her MP to raise awareness of the charity’s plight.
Newlife has issued twice as many emergency loans of specialist equipment to families with disabled and terminally ill children since lockdown started on 23rd March compared to the same period last year. With income from its stores, including one in Heanor, Derbyshire, having ceased while seeing demand for its frontline services double, the charity is now critically short of loan equipment and without the funds to purchase extra stock.
Kelli’s seven-year-old twin boys, William and Leon, both have severe autism, learning difficulties, ADHD and absolutely no awareness of danger. William also has a sleep disorder, is more mobile than Leon and highly impulsive – leading to a number of terrifying situations, including him setting fire to a tea towel on the hob and climbing to try and escape through his bedroom window.
But the specialist equipment loaned by Newlife for William, which is called a Safespace Voyager, means he is safe even when he’s awake through the night, so the rest of the household can sleep more easily too knowing he’s not putting himself, or them, in danger.
Kelli, from Worksop, said: “William doesn’t sleep much and he likes the feeling of dangling, so he will get out of bed and climb up to the curtain poles or swing from the light fitting. I have a bespoke extra tall child gate, but William just climbs over it. He also likes to wake Leon and they broke four beds in the last year.
“Although Leon is less mobile, he is a choke risk as he will put everything in his mouth. I can’t give each child my full attention at the same time, so when I’m sorting out one, the other is at risk. I urgently needed a bed for William that I could put him in and know he was not in danger if he was awake.
“I get very little sleep and for me life is about having to risk assess absolutely everything, constantly, which is exhausting.”
The change in routine due to the country being in lockdown to combat Covid-19 has also caused the twins’ anxiety to spike and their behaviours to escalate – so a safe place for William to sleep has proved a vital lifeline.
Kelli added: “We have reduced school support and have lost sensory integration activities and human contact and they don’t understand why. My mum has had to move in for the quarantine period to be an extra pair of eyes to keep them both safe, but without the emergency loan from Newlife I’m not sure we would be coping at all.
“It’s unbelievable how tired and stressed I have been, but I feel more like a human now and I’m able to parent both twins much better instead of William receiving the majority of my attention all the time.”
Newlife, which is in its 30th year, is now operating in a much reduced capacity and has temporarily closed all of its stores in line with national government advice. It has launched a £72,000 national fundraising drive to ensure its nurse-run helpline and emergency equipment services can cope with demand over coming weeks.
Newlife’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 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.
Newlife 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 visit https://newlife.support/COVID-19Appeal