A FAMILY from West Kilbride are taking on an amazing fund-raising challenge as they honour the memory of their “beautiful baby boy” on what would have been his 10th birthday.

Kirstine Christie and her husband Sol’s child Sol-John was born on July 15, 2012.

His life was sadly affected by a genetic condition called spinal muscular atrophy (SMA) type 1. SMA is a rare neuromuscular genetic disease.

SMA progressively destroys motor neurons - nerve cells in the brain stem and spinal cord that control essential skeletal muscle activity such as speaking, walking, breathing and swallowing leading to muscle weakness and atrophy.

The fund-raising for Willow (right) will be in memory of Sol-John who passed away in 2012Kirstine Christie has set up the fund-raiser

When Sol-John was born in 2012, there was unfortunately no treatment for SMA, and he passed away in his parents’ arms at just under six-weeks-old.

The fund-raising page explains further: “Both myself (Kirstine) and Sol are carriers of the defective gene so have a one in four chance of having a baby with SMA with each pregnancy. One in 60 people are carriers of this defective gene.

“Our worlds were rocked once again when our niece Willow was recently diagnosed with SMA type 2.”

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Though thanks to advances made in research and treatment of SMA, Willow, who lives in Irvine is thriving.

This is a trend Kirstine, a former Ardrossan Academy pupil, wants to see continue, and why the fund-raiser has been set up with all donations going to Willow.

Further to this: “She (Willow) will need a lot of equipment/physiotherapy which the NHS doesn’t cover in under 5 year olds.”

The NHS did provide Willow with her wheelchair, though so much extra support will not be provided as of yet.

So Kirstine and husband Sol, who is a former Greenwood Academy student, have organised an event for this fund-raising, with a touching tribute to their son Sol-John.

On what would have been his 10th birthday, July 15, 2022, they, along with other family members and friends, will be cycling around the Isle of Arran.

It means that not only will they have the opportunity to raise much-needed funds for Willow, but they will be doing so in honour of Sol-John.

The fund-raising for Willow (right) will be in memory of Sol-John who passed away in 2012Family and friends will cycle around Arran in their efforts to raise funds for Willow in Sol-John’s memory

Kirstine added: “Thank you so much for all the donations so far. Please in memory of our gorgeous boy every little helps and we will be so, so grateful for any donations.”

The fund-raising page is already active, with the family having already raised £440 towards their £500 target.

For anyone wishing to donate to the GoFundMe page, this is available online just now here.

And for more information on SMA, including awareness events and resources, visit smauk.org.uk/awareness-events-and-resources.