“You shouldn’t have to be a prisoner in your own home just because your child has a disability” says St Helens mum Laura Waterhouse. She was told by local health professionals that she would have to wait 12 to 18 months for an assessment to get the specialist equipment her young son Benjamin needs. So Newlife the Charity for Disabled Children stepped in to help.
Benjamin – who was two yesterday (August 1) – was born at 27 weeks of pregnancy. He has chronic lung disease with a tracheostomy in place to help him breathe, is oxygen dependent 24/7 and needs constant suctioning to clear his airway. Benjamin was almost eight months old before he was discharged from hospital, and because of his complex condition has frequent medical appointments.
Laura, from the Sutton area of the town, 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.”
What the family needed was a specialist buggy, with additional postural support for children with complex needs and 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 while they wait.
Right now, Newlife has another 28 children in the area in need of specialist equipment. Newlife needs to find around £25,000 to make this possible. Benjamin is one of 656 children Newlife has helped across Merseyside.
If you think you could help donate or fundraise so Newlife can help these Merseyside children go to: www.newlifecharity.co.uk/merseyside and donate. Alternatively, contact the Newlife Supporter Relations Team on 01543 462777 or email firstname.lastname@example.org.
Newlife 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 heart breaking 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.”
Know that every penny you give will be used to provide specialist equipment to help change young lives.
Pictured: Benjamin Waterhouse