For many five-year-old boys going to school, making new friends and sleeping in a big-boy bed is the start of them experiencing their own independence – but for Viyan Shah, from Burton-on-Trent, this is not possible because he has a life-limiting condition. He can only attend school in the mornings when he is well enough and he has to sleep in his parents’ room to ensure his safety and so they can cater to his medical needs as quickly as possible.
Thanks to his new specialist bed provided by Newlife Foundation for Disabled Children, he is now getting the essential care he needs. Not only is Viyan getting a good night’s rest but so are his family.
Viyan had an Atypical Teratoid/Rhabdoid brain tumour (ATRT) which was successfully treated but left him with a tracheostomy and gastrostomy. Sadly after 18 months in remission the cancer reappeared, this time in his spine. Since December Viyan’s health has deteriorated further and he is now fully dependent for all his care needs – he has no movement or sensation from the waist down and is a fulltime wheelchair user.
Before Viyan received the specialist bed from Newlife he had been given two beds from the NHS which were not suitable for the space available in his parents’ bedroom. The last bed he had was not appropriate for his needs and that’s when his family contacted the charity. Newlife wanted to provide him with equipment from its Emergency Equipment Loans service – but there were no beds that could cater to his medical needs.
Mum Binita Shah said: “Before we got the specialist bed every bed we had was unsuitable for Viyan; because of his tracheostomy he has to sleep in our room so we can observe him. Viyan is unable to sleep flat on his back as he has tumours on his spine so we would have to put at least three pillows underneath him to prop him up – it was not comfortable for him at all, he would constantly wake through the night.
“We needed to be able to get to him straight away but sometimes this was not possible because the previous beds were all too big. The beds also restricted the space available around the room to be able to access his medical equipment especially in an emergency.”
With no provision available locally to fund the £1,811 bed, Viyan’s family contacted Newlife for help. Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness.
Viyan can become very distressed when he spends time in hospital making the delivery of the bed even more important because he loves to spend time with his family at home. His parents minds’ can be put at ease because his health is no longer at risk.
Binita added: “The bed is fantastic, Viyan is now sleeping through the night which is amazing and it’s the perfect size for our room. We no longer have to prop pillows underneath him because the bed moves up and down. It is much easier to cater to his needs because we are able to access him better.”
Equipment Grants fund permanent provision of a wide range of aids ranging from wheelchairs and walking frames for mobility to specialist beds and car seats for safety; Emergency Equipment Loans provide a quick response for children with unstable life-threatening or life-limiting illness and to help those who face injury due to the absence of appropriate equipment; Play Therapy Pod loans of sensory toys aid the development of those with complex needs; Comfort Capsules help families of terminally ill children make memories. For details of all services go to: www.newlifecharity.co.uk or call the Newlife Nurse Helpline on 0800 902 0095 (free from UK landlines and mobiles).
Newlife has helped 891 children in Staffordshire, with equipment totalling over £1,000,000. However, the charity is currently working with a further 32 families, with equipment needs of £24,395. If you would like to help a child in the county, go to: www.newlifecharity.co.uk/Staffordshire for more details. Alternatively, call our County Liaison Team on 01543 431 444 or email local@newlifecharity.co.uk.
Pictured: Viyan Shah
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