The family of an Irvine tot who was diagnosed with the same genetic disorder that claimed her six-week-old cousin's life in 2012, is set to go on an emotional fundraising trip.
Brave mum of three Kirstine Christie, from West Kilbride, is set to honour her late son Sol-John - who passed away at just six weeks old from complications brought on by spinal muscular atrophy (SMA) - by raising money for her two-year-old niece Willow, from Irvine, who has the same condition.
Spinal muscular atrophy (SMA) is a genetic condition that makes the muscles weaker and causes problems with movement.
The Christie family plan to spend Sol-John's would-be 10th birthday by completing a sponsored cycle around Arran then will find the perfect spot to spread their eldest child's ashes.
It is hoped that the fundraiser will reach £1,000 to buy wee Willow — who has type two SMA — a specialised suit to help strengthen muscles while weight-bearing.
Kirstine said: "Our wee boy was thought to have had type 1 SMA, but now with more research, we believe it was actually type 0 which is very rare.
"Sol-John was my first baby and he passed at just six weeks old from pneumonia as he didn't have the muscles to cough. I was only 19 at that time.
"SMA kills the motor neurons and when Sol-John was born he was considered a floppy baby but then he gradually got worse and I had to feed him through a tube — which was really difficult as I was breastfeeding him and that was taken away from me.
"July 15 would've been Sol-John's 10th birthday so we're having a memorial for him and scattering my wee boy's ashes but all of the money raised from the cycle will be given to Willow to help buy equipment that isn't covered by the NHS.
"1 in every 10,000 babies are born with SMA and it is one of the biggest killers in infants but I believe more awareness is needed for parents to screen their babies earlier."
After five years of trying and multiple miscarriages, Kirstine and her husband Sol went on to have two adorable daughters, Sofia, five, and Millie, two, who will be joining their family on the island to help release the balloons at their big brother's memorial.
"The NHS have been amazing, but there are still certain treatments like physiotherapy and other expensive equipment which Willow will need as she continues to grow that aren't covered by the NHS," added Kirstine.
"We'll continue to support our family and do many more events to raise the funds which will help improve Willow's life as she grows."
Willow's mum Lorna Dempsey who lives in Irvine with partner Lee Christie and their five kids is so grateful to her sister-in-law for helping raise these vital funds.
Mum-of-five Lorna said: "I can't thank Kirstine and Sol enough for all of their support. I know this will be bringing everything back to the surface for them and I'm so grateful they are helping Willow while remembering Sol-John.
"We found out in October Willow had Type 2 SMA. We had concerns when she started regressing, stopped crawling, and was having trouble weight-bearing.
"There are three different types of SMA. Type 0 and 1 affect the child's lifespan. Willow's life span shouldn't be hugely affected but her mobility is and she'll never walk.
"Since Willow's diagnosis, emotions have been up and down. I'm so joyful and grateful she's here with us but I'm also grieving the life that she won't have.
"Every day there are so many more advancements but I do hope more awareness can be raised for parents to have their babies screened earlier as once the neurons die there is no bringing them back.
"Willow's dad Lee has MS, and his mobility is affected so he and Willow scoot about together in their wheelchairs."
You can follow adorable Willow's journey on Instagram @willowjourney_sma_type2
To contribute to Kirstine's online fundraiser, visit here.
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