A Towcester family are sharing their experiences of caring for their terminally ill daughter to help raise awareness of how Newlife Foundation for Disabled Children helps families in Northamptonshire.
Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness and one-year-old Melina Taylor is one of 213 children in the county to benefit from its support.
Melina was born with Spinal Muscular Atrophy Type 1; this causes severe muscle weakness which results in problems moving, eating, breathing and swallowing.
Mum Demet Taylor said: “We were so looking forward to the birth – we had gone out and bought everything we would need. But when Melina was born none of that was right for her. We needed specialist equipment to care for her. That’s when Newlife stepped in to help.”
Demet and husband Hugh had purchased a regular buggy, but Melina struggled to breathe because of her positioning in it. Demet said: “We needed to act quickly and Newlife provided us with a specialist Stingray buggy through an Emergency Equipment Loan. It was just what we needed and it has made a big difference. The buggy holds all her emergency equipment – she is now on a ventilator 24/7 following a tracheostomy four weeks ago.”
Newlife has worked with the family’s local statutory services, which have now provided a permanent replacement buggy. Demet said: “Unfortunately, that came without any weather protection, which is essential because of Melina’s condition, so Newlife let us keep the Stingray a bit longer and has given us a grant for a rain cover and extra straps for the new buggy to keep her safe.”
Newlife supports families through a range of practical support services. Equipment Grants fund permanent provision; Emergency Loans provide a quick response for children with life-threatening or life-limiting illness and those who face injury due to the absence of appropriate equipment; Play Therapy Pods offer loans of sensory toys to aid development; Comfort Capsules help families of terminally ill children make memories. These services are all accessed through the Newlife Nurse Helpline – 0800 902 0095.
A Comfort Capsule has also helped the Taylors. Demet said: “Melina needs to be constantly monitored; we were using a baby monitor but the video monitor within the Comfort Capsule I think is a life-saver for us. When Melina is in bed we keep it pointed at her saturation monitor so we can check on her oxygen levels and we can hear her breathing at the same time.”
A DVD player within the Comfort Capsule also helps distract Melina from pain. Demet said: “She can’t use her limbs but she is a very clever little girl, so having the DVD is very useful.”
Other items in the Comfort Capsule include a soft blanket to help keep her cosy, a camera and digital photo frame and a hand print maker.
To find out more about how Newlife supports families of disabled and terminally ill children in the county, go to www.newlifecharity.co.uk/northamptonshire.
The charity is currently working with a further seven families in the area who need specialist equipment totalling £9,115. If you would like to help, go to the website and Donate. Alternatively, contact the Newlife County Liaison Team on 01543 431 444, email email@example.com.
Newlife guarantees that 100 per cent of monies donated or fundraised in Northamptonshire will be used to specifically help children with disabilities and terminal illness in the county.
Newlife CEO Sheila Brown, OBE, added: “I know this is a busy time for families as they are planning for the festive season, but I am urging ‘local heroes’ to spare a minute to consider how they could help improve a disabled child’s life this Christmas.”