Family Stories
Children and families across the UK are benefitting every day from the specialist equipment, nurse helpline and sensory toys we provide. Read about some of the families we’ve helped below, and how Newlife is helping to change the lives of disabled and terminally ill children.
Oakley’s Story
Two-year-old Oakley from Hertfordshire has Cerebral Palsy and can’t walk without help, he has painful, involuntary spasms due to his dystonia and is non-verbal. At night he would wake several times and try to climb out of his cot, injuring himself.
Oakley is also tube fed through the night, but will crawl and climb, becoming tangled in his tubes, as well as banging his head on the side of the cot, resulting in cuts and bruises on a bad day. As he has no awareness of danger and a high tolerance for pain, he needs to be closely monitored at all times.
The situation became even more urgent when Oakley was admitted to hospital and needed a safe bed to sleep in for him to be transferred home, but Newlife was able to provide him with just the right bed through its Emergency Equipment Loan service which has high, padded sides and holes for his tube feeds to pass through so he can no longer become tangled. The bed is even big enough for Mum to stay and comfort him too.
“Oakley can’t escape from his new bed meaning we know he is going to be safe in there. There are holes for his feeding tube so it’s so much easier – and it means we aren’t worried about him pulling on it. Having the high and low functions makes changing Oakley so much easier. Having his sheets and himself changed due to sickness in the night can be difficult. But his new bed has really helped with this. Oakley is settled and comfortable and sleeps well and we can sleep too.”
Paige, Oakley’s Mum
Roman’s Story
The emergency loan of a specialist buggy was a ‘Godsend’ to the family of one-year-old Roman Pearse who has quadriplegic Cerebral Palsy, cortical vision loss and complex epilepsy, as it allowed them to leave the house while they waited for a specialist buggy from their local authority.
Due to his medical conditions Roman can’t sit up, crawl or roll over unaided, so although he wants to sit upright and see the world around him whenever he was in his standard high street buggy, it didn’t provide the support necessary, so he slumped to one side – making his very uncomfortable and risking long-term damage to his joints and muscles.
As the Plymouth family faced a wait of more around a year to receive a specialist buggy from their local health and social care services, the family turned to Newlife to bridge the gap with the emergency loan of a specialist buggy to meet all his needs and safely take him to medical appointments and into their local community as well as protect him during seizures.
“The loan buggy from Newlife means we have been able to take him everywhere we need to go and he’s enjoyed trips to the zoo and the aquarium too. It gives him the opportunity to spend a good amount of time away from home and helps his development, without us having to worry about the impact on his joints and posture – and it means Roman can just have a good time while we are out.
“He gets so excited when he sees us get the loan buggy out now. Having this has been a Godsend and has made all our lives so much easier!”
Lauren, Roman’s Mum
Gabriella’s Story
Gabriella-Jayne Cutler was born with achondroplasia, often known as dwarfism, which has affected most aspects of her life. With shortened arms and legs and smaller hands, poor core and little neck control that means she can only hold her head up for short periods, it means even finding joy in play was difficult – until she received the right specialist toys.
For the first 12 months of her life, Gabriella had to lay flat on her back as she was unable to sit up by herself and had a curve in her spine. Equipment such as a flat car seat and buggy helped with this, and at home Gabriella would lie flat on the floor, but she became easily bored and frustrated and needed toys to focus on to help distract her, as well as aid with her development.
Her mum and dad, Laura and Ian, weren’t sure which toys would best meet Gabriella’s needs, as she finds it difficult to reach for toys and to hold and grasp objects, so turned to Newlife for the free loan of a Play Therapy Pod of specialist toys to help her. Gabriella has now tried three of the pods, Sensory Play, Animal Adventure, and Multi-Sensory Play, to discover which sensory toys work best for her.
“We are loving trying out all the different toys. The toys are age appropriate, and she can try different pods as her development progresses. It has really helped her to have a rotation of toys so that she doesn’t get bored, especially during those times when she had to lie flat on the floor and would become frustrated.
“We have seen progress in her development since having the pods too, as she has been able to match animals with what sound they make. Now that she can sit up by herself, the most recent pod has toys which are appropriate for her to sit and play with.”
Laura, Gabriella’s Mum
Rhys’ Story
A portable hoist from Newlife has made life much easier for 15-year-old Rhys Porter from London who has Cerebral Palsy affecting both arms and legs and means he can now experience so much more in life.
Not only does the hoist mean Rhys can be moved safely without risk, either to himself or his parents, it also allows him more freedom and independence so he can easily go to watch his favourite football team and even play wheelchair football himself, as well as enjoy days out with family and friends without so many restrictions.
“We didn’t have a hoist at home that Rhys could use so his dad and I would have to carry him, which we shouldn’t really be doing. He needed both hips and femurs broken and reset, so we urgently needed a hoist for him as it was the only way we could move him post-surgery. Thankfully Newlife was able to quickly help. We literally don’t know what we would have done without it.
“It’s foldable and portable which means we can use it anywhere, so Rhys can use it to go to the toilet when we are out, so he can be away from home longer. Its given him so much more independence.”
Kelly, Rhys’ Mum
Elizabeth’s Story
Elizabeth Lowe seemed to be a perfectly healthy little girl who was saying her first words and taking her first steps, much to the delight of her family – but not long after her first birthday she began to regress, quickly losing her ability to speak and make any purposeful hand movements.
Now aged three, doctors have given Elizabeth a working diagnosis of Rett Syndrome, a rare and heart-breaking neurological and development disorder which affects the way the brain develops. It means parents of any child with the condition are forced to look on helplessly as they gradually loses all the skills they had watched them gain with such joy.
The condition is now affecting Elizabeth’s mobility and makes it much harder for her to go anywhere with her family from their home in Burntwood, Staffordshire. She now needs both a specialised car seat and buggy to really give her posture all the extra support it needs so she is pain free, while also helping her core stay strong, which will help her retain as much of her mobility as possible for as long as possible. But the price tag attached to the equipment – more than £7,000 for both pieces – prompted Elizabeth’s mum, Heather, to turn to Newlife for help.
“Having the right equipment to meet Elizabeth’s needs right now has made such a big difference, helping her feel more comfortable and be in less pain – in fact she loves the buggy so much it has become her safe place wherever we are.
“It means so much for Elizabeth to be able to join in with everything as much as possible while she can. We know that Elizabeth could wake up one day and no longer be able to walk, she will also regress to the point of no longer being able to chew and swallow and she will develop epilepsy, but the timeline is different for every child who has Rett Syndrome so we take each day as it comes.”
Heather, Elizabeth’s Mum
Our Family Services
Equipment Grants
Newlife provides a wide range of essential specialist equipment such as beds, buggies, wheelchairs, seating systems, and much more.
Emergency Equipment Loans
We offer the free loan of equipment, which can help a child in crisis because of unstable life threatening conditions or terminal illness.
Play Therapy Pods
The Play Therapy Pods are a box of sensory toys, that can be delivered direct to the family’s door. Our specialist play pods are always provided on the basis of need.
Nurse Helpline
Our free national Nurse Helpline offers emotional and practical support to families and professionals caring for disabled and terminally ill children, including specialist health information and support.
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