Heartbreak family hope to start screened IVF
A FORMER Oban couple whose lives came ‘crashing down’ when their baby girl died from a genetic disease are hoping to start IVF next year.
Jaki Aitken and partner Alex Johnson, now living in New Zealand, were devastated when their daughter Rebecca was diagnosed with Spinal Muscular Atrophy (SMA) – a disease most people have never heard of.
The five-month-old, whose grandparents Edwina and Hugh Aitken live in Oban, died in December but the heartbreak of losing her inspired a campaign by her parents, family and friends to set up a fundraising and awareness campaign to help ensure SMA is better known.
Kayleigh Jamieson, a friend of Rebecca’s mum, has teamed up with Jaki’s mum in Oban to put on a casino and raffle night at Soroba House on Saturday July 28. The money will be donated to the SMA Trust to raise awareness and help researchers find a cure. The trust needs £1.3 million to fund a threeyear research programme.
Jaki said: ‘Alex and I are just trying to carry on with life as best as we can but it will never be normal again. Not a day goes by that we don’t think about Rebecca. Everything we do is just for a distraction, to take our minds away from the complete sadness that will always be part of our lives now.’
And she revealed: ‘We are at the bottom of the waiting list for publicly-funded pre-implantation genetic diagnosis, basically IVF with an extra stage of screening the embryos for SMA. But that will not start until next year some time.’
Support in Oban had been ‘amazing’ and was ‘appreciated’ Jaki said, after their story was first published in The Oban Times.
‘I’m just absolutely gutted that I won’t be there for the casino night, but I have complete faith that it will be highly successful. One day when I feel ready, I plan to organise a fundraiser of some sort here in Christchurch.’
Local businesses have already donated prizes, but more are still needed. Barcaldine Castle has donated one night’s stay.
Kayleigh said: ‘Anything we can do so other families might not need to go through the same heartbreak has got to be worthwhile.’
One in every 40 people are carriers of SMA. If both parents are carriers it means there is a one in four chance of their baby being born with the disease. Ninety five per cent of babies diagnosed with it never see their second birthday.
The disease means babies can’t produce the protein needed to build muscle. Some will never walk, talk or crawl or sit up. They will never be able to support the weight of their own head which means most of them spend their short lives on their backs. They can’t swallow. A common cold is fatal.
Tickets for the casino night are £10, which includes £10 ‘free’ money. People can buy the tickets at Specsavers or the Made In Argyll shop in Oban, or email Kayleigh at kayleighajamieson@hotmail.co.uk
To find out more about The SMA Trust and how to support it, go to smasupport.org.uk