Vivien Price from Mumbles in Swansea is ten years old, but it’s not safe for her parents to take their eyes off her for a second. A rare genetic condition means she can have up to 12 severe seizures a day, each lasting more than an hour. Now an urgent appeal has been issued to help provide her with a specialist seat to keep her safe.
The genetic mutation which causes Vivien’s epilepsy also means she has severe learning difficulties, is non-verbal and tube fed. She can’t walk without help and uses a wheelchair outside, but part of her condition means she is also very hyperactive and, as she has absolutely no awareness of danger, would certainly cause herself harm unless watched constantly.
To keep her safe at home she urgently needs a large specialist seat which has a soft, supportive back to protect her when she has a seizure, stop her head dropping forward and cutting off her airway – but also has a harness stop her getting out and accidently hurting herself – which her mum Helene says would be ‘life-changing’.
However, the seat she needs costs £2,476. Now Newlife The Charity for Disabled Children have launched an appeal to help raise the funds needed to keep Vivien safe. Newlife is the largest charity provider of children’s specialist disability equipment in the UK.
Mum Helene said: “Vivien’s seizures began when she was six months old and they are the Tonic Clonic type, which means her body becomes stiff and her muscles will jerk uncontrollably, lasting last well over an hour.
“Her seizures are so severe I must administer rescue drugs straight away, instead of waiting the usual five minutes. Her seizures can cause her to cry and vomit – and she’s at risk of breathing this in and choking – but at other times she has stopped breathing and lost consciousness.
“Thankfully, the number of seizures has calmed recently, but when she has them, they are still very severe – and we know that at any given point they can increase again or even worsen, especially as she is now approaching puberty.”
Due to the rarity of the genetic mutation, Vivien’s precise prognosis is unknown. However, research suggests there will be neurodegeneration in the future which may lead to limited lifespan, but there is no precise timeframe.
Currently, parents Helene and Ian and Vivien’s 13-year-old brother, Frankie, are spending most of their time in their cramped kitchen, as it’s the only place they can keep Vivien contained. But even so, they can’t leave her for a second and she still manages to grab at things that can cause her harm.
Helene added: “When she’s not having seizures, she is happy but very hyperactive – which is also part of her condition. She’s like a smiley, baby kangaroo, bouncing about, but it can cause injury to herself and others.
“Vivien’s safety is our main concern. We would love to put this seat is a room we can all relax in together and spend time together in, but having this seat means it would be much easier to keep Vivien safe. It would even mean I could leave her for a few minutes to go to the bathroom, make a cup of tea, or answer the door, while giving me the peace of mind of knowing she is safe.”
To donate please visit https://newlife.support/Vivien. Alternatively, you can email [email protected] or call 01543 462 777. Always get the bill payer’s permission. Any money raised above the amount needed for the seat Vivien needs will be used to help other disabled and terminally ill children in need.
It is estimated that it costs three times the amount of money to raise a child with disabilities than it does a non-disabled child, and with costs increasing, it leaves families with no choice but turn to charities such as Newlife for help. In the past year Equipment Grant applications to Newlife from families have risen by a massive 60%, while total contacts to its Nurse Helpline from families and professionals seeking support has risen by 73%.
Kam Dulai, Newlife’s Child and Family Support Manager said: “It’s clear this seat will make a huge difference to Vivien and her family. We are calling on the local community to help us raise the funds necessary to help give Vivien the seat she needs to keep her safe and protected.”
*Newlife The Charity for Disabled Children has released a new report entitled Fight For Our Future. This paints a bleak picture where parents and carers are unable to meet their child’s most basic needs. Only 40% of families feel their child has all the equipment they need to live a full life and, similarly, 75% of professionals are concerned that children living in their area don’t have the essential equipment they need.
