An Inverness mum is backing a campaign offering a lifeline to dying children after a rare condition robbed her son of the ability to see, walk and speak.
Donna Mitchell’s worst fears became “a living nightmare” when her son Reece was diagnosed with Batten disease four years ago, aged five.
The incurable genetic disorder affects the nervous system and causes children to experience uncontrollable seizures, loss of mobility and difficulty with speech.
Reece was initially diagnosed with autism and epilepsy, but Donna instinctively knew something else was wrong.
She said: “The 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 the age of 12.
‘Reece lives trapped in his own body’
“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.”
Now nine years old, Reece is under constant supervision at home, where he is looked after by his mum with the support of Children’s Hospices Across Scotland (Chas).
Reece can no longer move, see or talk. He also 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.
“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.
“Reece lives trapped in his own body, and before Chas at Home reached us we lived trapped in our own home.”
Chas offering lifeline for families
Donna has now backed Chas’ latest campaign Every Child Everywhere to show her immense gratitude for all the nurses’ and volunteers’ help over the last four years.
The campaign, which will run for four weeks from today, shines a light on the charity’s home service in a bid to expand its reach and help more families in need.
It aims to offer vital support to children with life-shortening conditions in their own homes, even in remote areas where access to specialist help is often limited.
Donna said Chas has become a lifeline for her family and praised the “wonderful” Chas at Home girls Mairi, Amanda, and Chloe, who come to help them twice a month.
“They’re like part of our family,” she said. “They knew Reece when he was more able and have been with him throughout his illness.
“I don’t have a car and resources are scarce where we live so Chas at Home is literally a lifeline for our family.
“The service is just amazing. The charity is very much not about being a one-size-fits-all service – they adapt to offer you what you need.”
Helping children for over 30 years
Chas has been caring for vulnerable children for more than 30 years, with the aim to expand its dedicated services even further through the Every Child Everywhere appeal.
The charity believes no one should face the death of their child alone and is determined to ensure more families can be supported to enjoy precious time together.
Nicky Bridges, associate director for the charity’s outreach service, said: “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 so we’re asking the public for their help by making a donation to this very important appeal.”
Conversation