For one-year-old Nevaeh Latchford, a specialist car seat means she can be truly safe when she travels – instead of being propped up with towels by her desperate parents – while a specialist chair at her Clayton home in Manchester helps her safely sit upright, play with her siblings and really be a part of family life.
When Lauren Nevaeh, called Nevaeh by her family, was born 15-months ago, she joined siblings Lewis, 16, Logan, eight, and two-year-old twins Michael and Amaya, but from the start her parents Danielle and Mike knew ‘something wasn’t quite right’. Scans revealed extensive damage to the right side of her brain and they were told their ‘little surprise’ baby, would face huge challenges.
Unable to sit up, walk or talk, she can’t use the right hand side of her body, which even affects her ability to eat, so she is fed through a tube. Nevaeh has stiff, rigid muscles, painful spasms and hyper mobility which causes her joints to dislocate; she also experiences up to 20 seizures each day and has a curvature of the spine.
Mum Danielle said: “It was such a massive shock to have a consultant sitting there telling us all this, but we don’t look at what she can’t do, we look at what she can do – it just might take her a bit longer to get there than it did with our other children! She was six months old when we had her first smile, but she hasn’t stopped smiling since and she is really cheeky and loves giggling.”
With high street car seats unable to meet Nevaeh’s needs and her only options at home being her buggy or the floor, Danielle and Mike turned to Newlife the Charity for Disabled Children – the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness, which was quickly able to supply a suitable car seat, priced £550, followed by a £712 specialist seat for their home.
Mum Danielle said: “Statutory services weren’t able to help and anything which is special needs is triple the price of high street versions, but Newlife was able to help.
“Now we can go out in the car with peace of mind that Nevaeh is safe. Before, we had to use towels to prop her up and support her, which just wasn’t nice for her – and during a seizure towels don’t support her properly, she would just flop to one side and go stiff and her head would drop forward and close her airway.
“The new car seat has a swivel base, so it’s easy to get her in and out of the car and her head is tilted back so if she has a seizure and we can’t pull over, she’s safe as her airways are kept clear. There’s nothing she can hurt herself on.
“At home Nevaeh is able to play with her siblings and is just learning to sit independently. The chair from Newlife is just brilliant, it helps her sit up and play and be involved her with everything. We are amazed and chuffed at her progress – you can see her eyes light up when she does something new.
“It’s beautiful to see them all playing together when she’s in her seat. We use the attached tray for her to feel playdough and mess with yoghurt in her hands, all things she couldn’t do before. We just want to say thanks to Newlife a million times over – we can’t say how grateful we are.”
Right now, Newlife is working with a further 25 families in Greater Manchester, with equipment needs totalling £36,400 and has already supported 482 children with equipment needs of £406,223
Newlife is currently receiving more applications for help than at any time in its 25-year history, which is why public support is needed to support families caring for disabled and terminally ill children in Greater Manchester. The Newlife website includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected] – and shows specific ways people can help support children with disability and terminal illness and their families in the area.
If you would like to find out more about how you can support families in Greater Manchester, Regional Fundraising and Awareness Manager Claire Kelly would like to hear from you. Call her on 0749 4490 561 or email [email protected] You can also visit www.newlifecharity.co.uk/greatermanchester which highlights the support the charity gives families in the county through its Newlife Greater Manchester Fund.
Pictured: Nevaeh Latchford