Oban friends’ mission to find disease cure after heartbreak
THOUSANDS of miles could not keep two Oban best friends apart when heartbreak struck.
Kayleigh Jamieson flew 11,500 miles to Christchurch, New Zealand, to be with her school pal Jaki Aitken, whose baby girl was diagnosed with a genetic killer disease.
Jaki’s daughter, Rebecca Johnson, died in December, aged just five months, from spinal muscular atrophy (SMA) – a disease most people have never heard of.
Back in Oban, Kayleigh paid tribute to Jaki and partner Alex Johnson for staying strong and being ‘perfect parents’.
‘I don’t know how they held it together. Every day was such a struggle. She was their world. At no point did Rebecca not see Jaki smiling. We don’t know if she knew she was different from other babies, but for the short time she was here, it was a happy time.
‘I went out to be with them for three weeks. I got to hold Rebecca and see her little smile which will stay precious to me all my life. Jaki and Alex are the perfect couple and were the perfect parents. It is heartbreaking what they have been through. They know, because they are both carriers, there’s pretty rubbish odds if they have any more children together they might have SMA too. Their only other option is to have IVF.’
Now Kayleigh, who works at Tesco, has teamed up with Jaki’s mum, Edwina Aitken, a nurse in Oban, to raise awareness of the disease and funds to help researchers find a cure. Edwina and husband Hugh flew out two weeks after Rebecca’s diagnosis to have an early Christmas with her.
The SMA Trust needs £1.3 million to fund a three-year research programme, and Kayleigh is hoping Oban will do its bit to help.
‘When I heard of SMA, the first thing I thought of was the baby formula. When you Google it, you see the advert for the milk saying it supports babies through their first 1,000 days.
‘Sadly, babies with SMA don’t have 1,000 days. Most people have never heard of the disease but we want to change that and we can make a start in Oban.’
One in every 40 people is a carrier 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 talk, walk, 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, which risks them choking on their own saliva, and tube feeding is the only option. A common cold is fatal.
Jaki and Alex’s world ‘came crashing down’ when they got the diagnosis.
Jaki told us: ‘They told us our baby was going to die and she would be lucky to see her first birthday. She didn’t even make six months.
‘SMA is truly an awful disease for a poor wee baby to deal with. Despite all this, she was a trooper. We knew we had limited time with her so made the most of every single minute with her.
‘Losing your child is the hardest thing you can ever deal with. Every single hope and dream you have is shattered. They are your life and when they are gone your life feels void.
‘Rebecca taught us both what love really is and she has taught me that I am a lot tougher than I give myself credit for. You have to be to deal with this.
‘We can’t thank all our friends and family enough, both in New Zealand and back home for the amazing support we have received.’
And she added: ‘I can’t stress enough the importance to raise awareness for SMA. It is the leading genetic cause of death in infants.
‘There should be screening for it. Neither I nor Alex knew we were carriers. It’s crucial a cure is found for other families.’
In Oban, there are plans for a fundraising casino and raffle night at Soroba House on Saturday July 28. Local businesses have already donated prizes, but more are still needed.
Anyone interested in helping with the July event should contact Kayleigh at kayleighajamieson@hotmail.co.uk
To find out more about The SMA Trust and how to support it, go to smasupport.org.uk