Newlife the Charity for Disabled Children: Recent Episodes
Newlife
Every day, Newlife is changing the lives of disabled and terminally ill children across the UK.
We provide thousands of items of equipment every year. Fast-tracking delivery, to prevent suffering and when time is very precious. Childhood cancers, birth defects, accidents, diseases and infections can all cause disability. They are affecting children and their families every day.
Newlife has today written to the Chancellor to plead for an emergency grant for our vital services after being excluded from a slice of the government funding allocated to supporting charities through the pandemic.
Despite all our stores currently being closed, we are continuing to operate our vital services to families with disabled and terminally ill children around the UK who are most at risk of the effects of Covid-19.
This includes the UK’s only emergency equipment loan service which provides vital specialist equipment to families in crisis within 72 hours, often enabling children to be discharged from hospital to self-isolate in safety at home, equipment grants and our nurse-led support service. Right now, we have run out of emergency loan beds and without urgent support this service risks grinding to a halt. We need the government’s support, and we need it now.
Because there is a statutory duty to provide this equipment Newlife, as the UK’s largest funder of equipment for disabled children, is also unable to apply to Children In Need or Comic Relief, or other aids mentioned by the chancellor, for funding. But in reality, families turn to Newlife every day in desperation because of delays and cuts to statutory services, whether that be because of red tape or poor planning. Without Newlife, children risk being left living in crisis or even stranded on hospital wards when they could be shielded from Covid-19 at home. We are their lifeline.
https://www.signal1.co.uk/news/local/staffordshire-childrens-charity-appeals-for-help-to-support-families/
Newlife’s Harjinder Samra speaks to BBC Radio Shropshire about the charity’s campaign to stop local authorities refusing to provide essential specialist car seats to disabled children. Newlife has helped to reduce the number of local authorities in the UK with potentially unlawful blanket bans on the provision of specialist car seats by a third from 83% a year ago to 50% in just one year.
Did you catch us on BBC Radio WM?
The biggest shopping event of the year is back! Listen to Sheila Brown OBE, Co-Founder and CEO at Newlife talk about how shopping at Newlife Stores makes such a big difference to disabled children and their families across the UK. With bargain prices starting from just 50p; shopping at Newlife really is
good for the environment, good for your pocket and good for disabled children and their families.
When Newlife appealed for help raising funds so nine-year-old Bartek Wilczynski could have the wheelchair he needed so he wouldn’t be trapped in his Bedford home, it was his own emotional words about life with Cerebral Palsy that prompted BBC Radio Three Counties listeners to help him. Bartek’s words were so moving that listeners donated £500 more than the amount needed, so another disabled child in the area can be helped too. Here BBC Three Counties talk to Bartek and his mum Magda about their joy that the wheelchair is on its way and their thanks to everyone involved.
In the wake of Carers Week, parent carer Nicky Williams spoke to BBC Three Counties Radio’s Nana Akua about the impact caring for a child with disabilities has on mental health. Nicky’s six-year-old son, Jenson, has severe Autism and she speaks candidly about the impact his diagnosis has had on her life.
Five-year-old Maisie Reynolds from Merseyside has Cerebral Palsy and developed a painful curve to her spine, called Scoliosis. A specialist seat provided by Newlife has made the world of difference to Maisie. Here Maisie’s dad, Marc, speaks to BBC Radio Merseyside about the impact receiving an ‘amazing’ specialist seat from Newlife.
Trapped in his Tooting home, only able to crawl along the floor, six-year-old Jack Callaby has Cerebral Palsy and desperately needs a specialist wheelchair so he can go outside. His family turned to Newlife for help who launched an appeal to raise the funds needed. Here BBC London speaks to Jack’s mum, Amy, and Newlife’s Head of Charity Operations, Stephen Morgan, to discover more.
Nine-year-old Bartek Wilczynski has Cerebral Palsy and is trapped in his Bedford home because it’s too painful for his mum to push his heavy NHS wheelchair. He urgently needs a light-weight wheelchair so he can go outside and join in with his brothers and friends. Newlife is urgently calling on the local community for help raise the £1,309 still needed to fund the wheelchair. BBC Three Counties Radio have spoken to Bartek and his mum, Magda, as well as Newlife’s Senior Manager for Care Services, Carrick Brown to find out more.
Tom Dadd has Duchenne Muscular Dystrophy and is losing the ability to use his muscles. Although a powered wheelchair gives him freedom to get around, having no option but to sit in it all the time is causing painfully stiff muscles - and risks his spine painfully curving.
Tom’s dad, Simon, and Newlife’s Head of Charity Operations, Stephen Morgan, speak to BBC Radio Northampton about an appeal by Newlife to raise £3,430 for Tom to have the specialist seat he desperately needs.
Two-year-old Rhys from Milton Keynes has already endured 14 surgeries because of a genetic condition. To prevent him from choking he must be kept upright and supported at all times and travelling in a standard car seat was putting his life in danger.
The Emergency Response Service run by Newlife provided the specialist car seat he needed, but this service is under threat and needs urgent donations to survive. BBC Three Counties Radio speak to Rhys’ mum, Stacey, and Newlife about the difference the emergency service can make.
Photo: Rhys Dean with his sister, Cerys.
BBC Radio Surrey talk to Newlife’s Campaign and Policy Development Manager, Clare Dangerfield, about why more and more families are needing to turn to charities for help funding specialist equipment, and to Catriona Lewis, whose daughter Leia needed a specialist seat.
An Aylesbury five-year-old who has a brain stem, but her brain cavity is filled with fluid, is at risk choking to death because the only bed the NHS offered was too big to fit in her house. Newlife provided the emergency loan of a specialist bed for Lily and is now urgently raising the £5,490 needed so she can have a specialist bed of her own to keep.
After stepping in to provide three-year-old Holly Bryan with the loan of a specialist bed to prevent her from injuring herself during the night through its unique emergency equipment loan service, Newlife is now appealing to the local community to help raise funds so Holly can have a special bed of her very own. Holly has an undiagnosed syndrome that causes her to repeatedly bang her head and feet against the sides of her cot throughout the night, leaving her mum petrified and utterly exhausted.
In its report Equipment Crisis for Disabled Children, launched at the House of Commons last week, we highlight why children are being deprived specialist equipment to keep them safe. 16-month-old Asher Watkin needs to have a specialist seat that keeps him properly supported when he is feeding to stop him choking on his milk yet his local council provided something that was totally unsuitable for his needs. Here, his mum Tara talks to BBC Radio Essex about the struggles they have faced trying to get Asher what he needs. Newlife’s Policy Development Manager, Clare Dangerfield, also speaks about the legal obligation that local authorities have to provide essential disability equipment to children like Asher.
Laura Rutherford, mother of Brody, is campaigning to have nappies for older children stocked in supermarkets.
Today she talks to BBC Radio Scotland and is joined by Newlife’s Head of Charity Operations, Stephen Morgan, to discuss policies preventing disabled children receiving the equipment and services they need.
From: Heart FM - Yorkshire
Being interviewed is Nikki Giles, mum to Max and Freddie, whose story is featured in the report and highlights how lack of publicly run emergency equipment service is putting lives at risk up and down the country. Newlife’s Head of Charity Operations, Stephen Morgan, is also interviewed and provides an overview of the campaign, Equipment Crisis for Disabled Children’.
Newlife is urgently calling on individuals, groups and businesses in Manchester to raise £32,000 to help 30 disabled children in the city who are currently deprived of life changing specialist equipment. It’s heart-breaking but if we aren’t able to raise the money these children will go without.
Today BBC Radio Manchester speaks to Abigail Morrison from Stockport about the difference having a standing frame from Newlife has made to her son, three-year-old Bailey Jennings, who has Cerebral Palsy. Read More
For more information about Fundraising for Newlife in Manchester contact Jane Harries, Newlife’s Regional Fundraising and Awareness Manager for the North West on 07494 490561.
Jake Johnson from Sheffield has always wanted to cycle around the world. Now he’s about to turn that dream into a reality to raise money for Newlife The Charity for Disabled Children – a cause close to his heart. Jake, aged 22, and his friend, Pierre Subtil, 23, will be setting off from Singapore on January 1, 2019, on the adventure of a lifetime. They will spend around seven months cycling the long route from Singapore to France, covering over 16,500 arduous kilometres on a journey including South East Asia and Iran.
The pair are hoping to raise £5,000, and as much awareness as possible for Newlife along the way. Although their love of adventure and cycling bonds Jake and Pierre, it is, Lottie, Jake’s younger sister, who inspired the adventurous fundraiser.
Jake said: “Lottie has Cerebral Palsy, a condition which means she can’t use her arms and legs. She was given a specialist seat in 2013 and a hoist in 2015 by Newlife. I saw how both pieces of equipment made life so much easier for both her and my parents.”
Newlife’s Chris Fielding, Deputy Community Fundraising Manager, also provides an insight into the important work of Newlife and the vital role fundraisers, like Jake, play in enabling the charity to help as many disabled and terminally ill children as possible.
Read More at http://newlifecharity.co.uk/docs/latest_news/EVFVVupZupKJOCPeQs.shtml?select=/local/county.php%3Fid%3D21
https://www.facebook.com/HalfWorldAway
https://www.justgiving.com/fundraising/cycling-eurasia-for-charity
The family of a two-year-old from Shedfield with a life limiting condition were told she would need to wait at least a year before she could be assessed for a specialist buggy, because NHS West Hampshire don’t usually assess children under the age of three. Here Eva’s family talk about the many challenges they face and about Eva’s condition. Clare Dangerfield, Newlife’s Policy and Campaigns Manager calls for NHS Trusts to review policies so all disabled children, regardless of age or location are assessed for specialist equipment.
A Stoke-on-Trent mum who wakes up ten times a night to stop her two-year-old son, who has Autism, from seriously injuring himself, has praised Newlife for the emergency loan of a specialist bed after Stoke and Staffordshire NHS said they couldn’t help. Mum Helen Mountford says the bed has changed their lives.
BBC Radio Sheffield speaks to Newlife’s Head of National Fundraising, Ian Fraser, after an extremely generous £1,000 was donated towards the £2,955 needed for a specialist travel bed for nine-year-old Harry Cooper.
Harry can’t walk, talk or feed himself and has seizures so severe they could kill him. He is totally dependent on his Mum, Gemma, for his every need. The only relief for Gemma, who is pregnant, would be for Harry to go with his twin brother and younger sister for a sleepover at their grandparents.
Sheffield nine-year-old Harry Cooper can’t walk, talk or feed himself and he suffers from seizures so severe they could kill him. He is totally dependent on his Mum, Gemma, for his every need – day and night. The only relief for Gemma, who is pregnant, would be for Harry to go with his twin brother and younger sister for a sleepover at their grandparents – but without a specialist travel bed, this is simply impossible. Newlife needs to raise £2,955 to fund the bed he needs. Today (Thursday) BBC Radio Sheffield speak to Harry’s mum to find out more.
Bewdley seven-year-old Charlie Moore has severe Autism and feels compelled to hit his head repeatedly against any hard surface – to such an extent he’s burst a blood vessel in his face, leaving him with two black eyes. But the overnight respite care provided by the local authority once a week is frequently cancelled because the unit doesn’t have a safe place for him to sleep.
Newlife needs to raise £2,899 to fund a specialist travel bed so Charlie can continue to go to respite. Today (Wednesday) BBC Radio Hereford and Worcestershire speaks to Charlie’s mum, Annette, and Newlife’s head of charity operations, Stephen Morgan, to find out more.
Stephen Morgan, Head of Charity Operations, for Newlife the Charity for Disabled Children provides ‘expert’ comment on a story about a baby girl from Leeds who has spent the last nine months in hospital after a severe case of meningitis that resulted in her having to have both her arms and legs amputated. On her first visit home in over nine months her parents were told that she wasn’t disabled enough to have a disability social worker. Newlife was invited to provide an insight into the statutory obligations, clarification on the legal position and to reinforce Newlife’s position as the UK’s leading charity for disabled children.
Newlife needs to raise £36,000 to give 46 children across the East Midlands equipment they urgently need to reduce pain, prevent their conditions from deteriorating and to help them do everyday things most of us take for granted. Piper Walker from Leicestershire is one child recently helped by Newlife. Click here to see how the specialist seat is vital to her everyday life.
Newlife’s Head of Charity Operations spoke to BBC Radio Sheffield this morning to talk about Newlife’s experience of working with families seeking care and support through the provision of specialist equipment for disabled and terminally ill children.
A special-needs seat will get ten-year-old Sienna Scott, from Hemel Hempstead in Hertfordshire, out of her bedroom and into the kitchen to get messy with flour and eggs and do some home baking with her loving mum. Sienna has a condition affecting her brain called Joubert Syndrome – as a result, she is unable to walk or speak and is vision and hearing impaired. Without a specialist seat to keep her safe and supported, Sienna has been stuck in her bedroom or in a seat in the living room that she has long outgrown. She can’t even share meal-times with her family because she hasn’t got the right chair. Sienna loves to get involved in anything sensory, and her mum Emma Turner would love to be able to take her into the family kitchen to do some baking together. Emma said: “At the moment, Sienna is stuck in her bedroom or in the living room – she never gets to see the rest of the house because I can’t safely carry her from room to room. The seat Sienna needs has wheels on it so she can be moved around the house – it also has an adjustable height so she would be able to be involved with family activities. Crucially, the seat also has plenty of padding which is essential for keeping Sienna safe and comfortable.” A partnership between Newlife the Charity for Disabled Children and Marks and Spencer is providing Sienna with the £3,250 she needs for the specialist seating. Emma said: “Having this seat will make a huge difference to Sienna’s quality of life – she will be able to sit with the family at meal times and enjoy playing whilst being comfortable and safe. Most importantly, she won’t be isolated to two rooms in the house.” M&S has worked in partnership with Newlife since 2006 as part of its Plan A commitments, donating returned products and clothing samples that cannot be sold, to the charity to be resold or recycled. The majority of the donated products are sold in the Newlife SuperStore in Staffordshire and the charity recycles the remaining items, all to raise money for children with disabilities. In October 2010, M&S launched a grants scheme, which has specifically helped fund over 260 pieces of essential equipment, totalling in excess of £850,000 for disabled children in local communities across the UK. Jacquie Leonard, Community Programme Manager at Marks & Spencer, said: “Our partnership with Newlife is not only great for the environment but it also helps to improve the lives of disabled children by providing much-needed specialist equipment. We are delighted to be able to support such a vital charity.” Right now, Newlife is currently working with three families in Hertfordshire with equipment needs totalling £2,184. To find out how you could help a child near you, go to: www.newlifecharity.co.uk/hertfordshire. Alternatively, contact the Newlife Supporter Relations Team on 01543 462777 or email local@newlifecharity.co.uk.
Newlife Head of Operations Stephen Morgan added: “The UK has more disabled children than ever before – and our partnership with M&S benefits hundreds of children. It’s an outrage that families have to ‘battle’ local services and yet still face heart-breaking refusals. The support of organisations like M&S means we can change lives across the UK every day.”
Newlife guarantees that 100 per cent of monies donated or fundraised in Hertfordshire will be used to specifically help children with disabilities and terminal illness in the area.
Trax FM is an Independent Local Radio station that broadcasts to Doncaster and Bassetlaw.
MUM’S £500 TAXI BILL FOR DISABLED SON A Doncaster mum who was refused a specialist car seat for the younger of her two disabled sons was hit by a massive £500 taxi bill in just nine weeks.
Fourteen-year-old Matthew Crossland has a severe type of epilepsy and sometimes needs to be admitted to hospital. When that happens, and she needs to be at Matthew’s bedside as much as possible, mum Debbie uses a care company to transport six-year-old Daniel to and from school. But when Daniel outgrew his safety car seat the care company couldn’t step in because its vehicle doesn’t have the adaptations needed so he can travel in his wheelchair. Daniel’s own condition means he has around 100 seizures a day – he is severely sight impaired, unable to walk and is fed through a tube. Statutory services do not fund specialist car seats, so Debbie faced having to buy the £2,735 equipment herself.
Desperate for help, she turned to Newlife which, with the help of funding from the River Island fashion store chain, came to the rescue to provide Daniel with a suitable car seat, keeping him safe and supported at all times. Debbie – from the Bessacarr area of the town – said: “The new car seat has been fantastic – it has a seat that is very similar to the one on Daniel’s wheelchair so he is much more comfortable and supported. His old seat didn’t recline and as he regularly has seizures in the car it was really worrying. But now we are able to go on longer journeys, knowing that Daniel is comfortable and, most importantly, safe in the car!”
The River Island funding comes through its UK-wide ‘fantastic plastic’ initiative – donating the profits from the sale of every five pence carrier bag in every store to Newlife. To date, this initiative has resulted in more than £500,000 of specialist equipment. Every day, disabled children around the country are having to use car seats that not only cause them to suffer avoidable pain, but are actually putting them at risk. Why? Because local services will not provide them with the appropriate equipment to keep them safe. While dedicated front line professionals do their very best, too often their hands are tied, so every day disabled children are being failed – it simply isn’t right!
As the UK’s largest charity provider of specialist equipment for children, Newlife comes to the rescue, saving and changing lives every day – but it can’t do this alone. Newlife needs your help. There are currently 15 children in South Yorkshire who are waiting for equipment totalling £8,987. To find out more about how you can help, donate or fundraise, visit www.newlifecharity.co.uk/southyorkshire, call 01543 462777 or email local@newlifecharity.co.uk.
Jonty is a bright and lively six-year-old who loves going to his local school and joining in with his classmates. But that is under threat if his parents cant secure a £7,588 powered #wheelchair before the start of the next school year.
Jonty has Quadriplegic #Cerebral Palsy and #epilepsy. Mum Jessica says: 'He has surpassed all expectations, given his dire prognosis at birth. Jontys epilepsy is well controlled - he hasnt had a seizure since before Christmas - but it can be sparked by overwhelming situations.
'A small school environment is best for him, to help him realise his full potential, so we are very fortunate that has a place at a local mainstream school where class sizes are smaller than average. He needs one-to-one support, but is thriving - making friends and joining in with everything.
'He currently has a lightweight manual wheelchair, which we funded, and while he can self-propel it around our own home, he relies on adults to push him around at school. However, there is a slope into the early years learning area - and pushing Jonty up and down this breaches health and safety regulations for staff and carers. So to be able to stay at the school he needs a powered wheelchair - but he cant be considered for a statutory assessment until he has been seizure-free for 12 months. By the time he reaches this point he will already have lost the school place.'
Jessica added: 'Its critical Jonty gets a powered wheelchair in time for the new school year in September, but with an eight-week order turnaround time that means we need the funding in place by mid-July at the latest. Theres not a lot of wriggle room!'
TO HELP VISIT - http://newlifecharity.co.uk/hertfordshire
Stephen Morgan from Newlife talking with Jumoke Fashola about working with families and children with disabilities
Don't forget to tune into BBC Radio 4 for our BBC Charity Appeals on 13th December at 07:55 & 21:26 to Listen. Learn. Give. Share and support Newlife http://evt.mx/pj5ienlu
Please tune into Radio 4 on 13th Dec at 07:55 & 21:26 to - Listen . Learn . Give - Share and support Newlife. http://evt.mx/pj5ienlu
Santa Dash 2014 a selection of interviews - audio by Kevin Ford (Student Volunteer - University Of Wolverhampton) #newlifesantadash #2014