Inverness mum facing the death of her wee boy praises CHAS charity's home support lifeline service
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Donna Mitchell has described how her worst fears were realised after her son Reece was diagnosed with autism and epilepsy when aged five.
She instinctively knew something else was wrong and sadly doctors confirmed Reece had life limiting Batten disease.
Donna said: “This became a living nightmare and doctors explained how this cruel condition would cause blindness, childhood dementia, paralysis, loss of speech, and seizures.
"I listened in horror as they told me there is no cure, and I should prepare myself that my wee boy will die by age 12.
“His eyesight was first to go, but he kept fighting to stay active and eat. Even as the disease took over, he would still say “mum” over and over on a loop, but now that has stopped which is heart-breaking.”
Donna told of the family heartbreak as Children’s Hospices Across Scotland (CHAS) has launched its spring campaign urging Scots to help the charity reach dying children and their families in desperate need of their support wherever they may live in Scotland.
The Every Child Everywhere appeal shines a light on the CHAS at Home service which supports families in their own homes, even in remote
areas where access to specialist help is often limited.
Bringing dedicated CHAS care into the homes of families is an especially
vital service given the ongoing cost of living crisis.
Donna describes the support her family receives from the CHAS at Home service as "a lifeline".
Former classroom assistant Donna, who cares for Reece full time, said:
“Before he became ill Reece was such a happy, playful, mischievous wee boy who loved cars, fire engines, anything with wheels and bouncing on the
trampoline.”
Now aged nine, Reece can no longer move or talk any more. He is also
blind, suffers regular seizures, and is fed through a tube in his tummy.
“To watch my beautiful boy go from a normal wee boy to this has been
devastating,” said Donna, who is also mum to daughters Courtney, 30, and
Alexandra, 20.
“Reece lives trapped in his own body, and before CHAS at Home reached us we lived trapped in our own home.
“The service is just amazing. The amazing nurses and volunteers travel to
families who can’t get to a hospice. I appreciate this so much as I don’t have a car and resources are scarce where we live so CHAS at Home is literally a lifeline for our family. I know other CHAS families who simply can’t afford petrol in the cost of living crisis which is really sad."
Donna added: “Our wonderful CHAS at Home girls, Mairi, Amanda, and Chloe come to us twice a month. They’re like part of our family. Nothing is ever too much trouble and we always look forward to them coming so much. They knew Reece when he was more able as they have been with him throughout his illness.
“CHAS is always telling me I could up my support if I feel I need it which is great to know that support is flexible. CHAS is very much not about being a one size fits all service – they adapt to offer you what you need.”
Nicky Bridges, associate director for CHAS Outreach Services said: “While the charity’s two hospices are within a manageable drive for much of the Scottish population, it is not always possible for some children and families to come to us.
“The continued cost of living crisis makes the cost of travel prohibitive for many families, whilst others have additional caring or work responsibilities that can’t be easily left behind. Sadly for some, their child’s health condition simply makes leaving the family home too challenging so our unique CHAS at Home service comes to them.”
Currently there are more than 16,700 babies and children with life shortening conditions across Scotland. CHAS has been caring for many vulnerable children for more than 30 years through a wide range of dedicated services and wants to reach even more.
The charity believes no one should face the death of their child alone and is determined, through the Every Child Everywhere appeal, that more families can be supported to enjoy precious time together filled with as much happiness and joy as possible.
Nicky Bridges added: “There are thousands of families across Scotland
having to deal with the unthinkable reality that their child may die young.
The CHAS at Home service is vital in helping bring the dedicated care of our nurses directly into the homes of the families like Reece’s wherever they may live in Scotland.
“We know however that we can’t reach everyone who needs us without the
kindness and generosity of our supporters. We need to increase our income
to reach every family that needs us everywhere so we’re asking the Scottish
public for their help by making a donation to this very important appeal.”
To find out more about the appeal and to donate visit:
www.chas.org.uk/everywhereappeal
