The family of a Stirling youngster living with an extremely rare neurological condition have thrown their backing behind a charity’s appeal to expand their vital offering.
Ten-year-old Quinns Rutherford was initially believed to have cerebral palsy, but further tests revealed the diagnosis of an extraordinarily rare neurological condition called GNA01 - which affects just a few hundred people worldwide.
The condition causes severe movement difficulties and has led to lengthy hospital admissions, including one six-month stay.
Mum praises transformative impact of CHAS care
Facing those challenges, Quinns’ mum Jennifer has spoken of the transformative impact of the time spent at the Rachel House facility offered by the Children’s Hospices Across Scotland (CHAS) charity.
The charity runs a pair of hospices in Kinross and Balloch, aiming to ensure every family facing the devastating reality of a child with a life-shortening condition can access expert care, wherever and whenever they need it.
Among those families securing that support are the Rutherfords, with Jennifer full of praise for the charity - and talking up the power of time in the jacuzzi.
Jennifer said: “For those few days, I can just be his mum again.
“We’re not thinking about medication, equipment, appointments or care routines. We’re spending time together as a family. We can breathe. We can rest. We can make memories.
“When Quinns is in the water, the warmth helps his muscles relax and he smiles so much.
“I imagine the freedom being in the water must be amazing as the rest of the time he has to be supported in his wheelchair including being fully strapped in.
“Opportunities to swim together as a family are rare because of Quinns’ complex needs.
“The new hydrotherapy pool will give families like ours opportunities we simply wouldn’t otherwise have.
“The difference for Quinns will be transformational and we are so excited to be able to swim together and make lots of memories.”
CHAS launches £20m funding appeal
CHAS supports babies, children and young people with life-shortening conditions, providing specialist nursing and palliative care, family support, therapies, respite and end-of-life care.
The charity says demand for its services has grown to its highest level, with CHAS launching a three-year, £20million funding appeal.
It will support the rebuilding of its Rachel House facility in Kinross creating new therapeutic, sensory and wellbeing spaces, including a large purpose-built hydrotherapy pool, and also the revamping of its Robin House base in Balloch.
They will also look to expand care and support delivered directly into family homes and enhance specialist support in hospitals across Scotland.
CHAS chief executive Rami Okasha said: “Every week in Scotland, families hear news that will change their lives forever.
“They learn their child has a condition that will shorten their life, and from that moment they begin a journey no family should have to face alone.”
“CHAS is there from diagnosis onwards, helping families navigate the unimaginable. We provide expert care, practical support, respite, therapy and, when the time comes, end-of-life care and bereavement support.”
“The reality is that children’s hospice care is changing. More children with life-shortening conditions are living longer, often with increasingly complex needs. That is something to celebrate, but it also means demand for specialist support is growing rapidly.”
