It’s us and Elise against the world
Dalbeattie mum Zoe Houston has told how the suspension of respite care services has hit her family.
The 41-year-old, whose daughter Elise has a genetic condition so rare that she is one of only two known sufferers in the world, received one overnight stay each week at Acorn House in Dumfries.
But the last visit offered to 11-year-old Elise, who rates highly on the autism spectrum, was on March 15.
And the weeks without any help have left Zoe and husband Craig, who have both been working full-time during lockdown, completely exhausted.
She told the News: “It’s been a nightmare. Elise only sleeps four to five hours a night maximum and on the worst night I think she slept for 45 minutes. The last time she was there was March 15 and we usually get one night a week at Acorn House.
“Both my husband and I are self-employed and we have been working throughout. I don’t really feel like I have managed through this. It’s been very, very difficult.”
Elise, who has a chromosomal abnormality, has physical health problems as well as being on the autism spectrum.
Zoe said: “We were told that Elise wouldn’t walk, wouldn’t do anything. She uses a wheelchair but just to go long distances.
“To look at her you probably wouldn’t know there was anything wrong but she is high on the spectrum.
“She doesn’t recognise danger. She would run out in front of a car, for example.”
The youngster also suffers from kidney problems and has a stoma.
Zoe said: “Elise has been going there since she was four. Acorn House also offers social contact for her. We have had to keep her in the house and she has had no social contact other than us. It’s been me, her and her dad against the world more or less.”
The concerned mum added: “If we had a date when it was reopening then it would be complete piece of mind for parents and give us something to aim for.
“When it does reopen all the parents are obviously going to want in so there is going to be a massive backlog. It’s so far fallen on deaf ears.
“We had a letter last week telling us they were there for us on the phone but that’s not really what we need.”
She also raised fears that there could be ulterior motives for the delay in reopening the service.
She said: “My worry is that they are going to shut it permanently and say ‘you managed without it for four months, it’s not needed’.
“There is literally nothing else in Dumfries and Galloway for us and we are exhausted.”
A spokesman for the region’s NHS said last week that it could offer no timescale on the “potential reopening” of Acorn House.
But he said that staff from the facility would “continue to offer support, advice and guidance to parents and carers during these challenging times”.
Vital service Acorn House Exhausted mum Zoe Houston with her daugher Elise