A mum who felt like a “prisoner” in her home is enjoying a new lease of life with her disabled son.
Laura Waterhouse was told she would have to wait 12 to 18 months for an assessment to get the specialist equipment needed by her two-year-old son Benjamin.
I don’t feel like a prisoner anymoreLaura Waterhouse
So Newlife, a charity for disabled children, stepped in to help.
Laura, who lives in Sutton, said: “You shouldn’t have to be a prisoner in your own home just because your child has a disability.”
Benjamin was born at 27 weeks of pregnancy.
He has chronic lung disease with a tracheostomy in place to help him breathe, is oxygen dependent and needs constant suctioning to clear his airway.
He was almost eight months old before he was discharged from hospital and he has frequent medical appointments.
Laura said: “My husband works full-time so I usually manage the hospital appointments on my own with Benjamin.
“We had a standard pram; it was a good one, but just not designed to carry all his essential emergency kit – heavy oxygen tanks, suctioning machine and monitor – as well as his tracheostomy kit, feeding pump, catheters and everything else you need for a young child.”
She added: “When we went out, some of the equipment was piled up on the pram and the rest was slung across my shoulders.
“Every time he needed suctioning I would have to put the bags down – whether it was pouring with rain or not – see to Benjamin and then load up again.
“It made trips out really stressful, so we didn’t go out unless we absolutely had to.”
The family needed a specialist buggy, which had additional postural support for children with complex needs and was designed to accommodate emergency equipment.
Laura said: “We were told that we would have to wait between 12 and 18 months just for an assessment of Benjamin’s needs through local wheelchair services – but there was no way we could wait that long.
“So with the help of Benjamin’s care team we applied to the charity Newlife. One of their Newlife nurses said they had just what we needed and turned around our request really quickly.”
Laura added: “The loan of a specialist buggy has made a huge difference – just being able to take Benjamin out of the house for a walk is great, knowing that we’ve got all his emergency kit in place and ready to use if it’s needed.
“I don’t feel like a prisoner anymore.”
Newlife has now encouraged the family’s local statutory services to assess quickly and provide for Benjamin’s long-term needs.
Until then, Benjamin continues to use the loan buggy.
Benjamin is one of 656 children in Merseyside being helped by Newlife and a further 28 children require specialist equipment. It needs around £25,000 to make this possible.
Newlife’s head of charity operations Stephen Morgan said: “It’s an outrage that families of disabled and terminally-ill children have to ‘battle’ local services for help – and yet they still face heartbreaking delays and refusals.
“That’s where Newlife can help; we change lives across the UK every day – but we can’t do it alone. Please help us to help more children like Benjamin across Merseyside.”
To donate to Newlife or raise funds, go to www.newlifecharity.co.uk/merseyside, call 01543 462777 or email firstname.lastname@example.org.