Lissencephaly fundraiser: Edinburgh family launch fundraiser to buy camper van to take daughter with rare debilitating genetic condition on holiday
An Edinburgh family are trying to raise £25,000 to buy a camper van so they can take their daughter who suffers from a rare debilitating genetic condition on holiday around the UK.
Isla Mcquarrie is 22-years-old and has had a rare genetic condition called lissencephaly since birth, she also has intractable epilepsy and has multiple seizures everyday.
Lissencephaly is when a baby’s brain doesn't develop properly in the womb and can have a range of complications including stunted mental and physical development, muscle spasms and seizures.
Speaking exclusively to the Edinburgh Evening News, her father, John Duggan, who grew up in Ratho, described how challenging it is to find support for Isla’s condition, and why they are now asking for help to raise funds towards taking her on holiday.
He said: “This last year has been tough, Isla used to go to the day centre four times a week but when the lockdown started, that was just gone, and she didn’t understand.
"We found out recently, the doctors told us, that she has actually become depressed, I know it’s been hard for everyone but when Isla doesn’t know why she can’t go out it’s really difficult.
“The most challenging thing for us over the last 20 years has been that there are no specialists in the UK for lissencephaly, most doctors have never even heard of it so they don't have support or any answers.
"It’s sad to say it, but we’re used to it now, we’re used to people not knowing what to do.”
Earlier this year, Isla almost died after she found herself in hospital experiencing a 36-hour seizure caused – doctors think – by an abscess in her mouth. Her father said that it gave them a real shock and prompted them to start the fundraiser.
At the moment she can’t be taken on long journey’s due to the regularity of her seizures, which is why the family have decided to buy a camper van, so that Isla has somewhere to rest.
Mr Duggan continued: “The long seizure was really scary, and afterwards we just thought that we needed to find a way to make sure that Isla was actually getting to do things she could enjoy.
"She was so full of life before.”
They haven’t finalised a date but hope to secure the money and have their first family holiday in years – potentially starting with the North Coast 500 – next summer.
Mr Duggan, and his partner Emma Mcquarrie, have never applied for financial support or launched anything like this fundraiser before, but Isla’s 36-hour seizure earlier this year made them realise how valuable their time is.
Mr Duggan said: “This is a huge step for us and I don’t really know what to say actually, I’m just really thankful to everyone that is helping to raise awareness of Isla’s cause.
"This would not only change Isla’s life, it would change the whole family's.
"It would mean that we could actually do things together, it would let us be free instead of being trapped like we have been for so long.
“I just wanted people to know how life changing their help would really be for us.”
If you would like to donate to Isla’s fundraiser you can do so here.