THE FAMILY of an Irvine toddler who is battling a rare medical condition are embarking on an amazing fund-raising effort to help her on her journey.

Two-year-old Willow Christie’s life is affected by a genetic condition called spinal muscular atrophy (SMA) type 2, a rare neuromuscular genetic disease.

Now her aunt and uncle, Sol and Kirstine Christie, are launching a fund-raiser to support the tot, after their own life changing experience with SMA.

Kirstine and her husband Sol’s child Sol-John was born on July 15, 2012, with his life affected by SMA type 1.

At the time of Sol-John’s birth, there was unfortunately no treatment for SMA, and he passed away in his parents’ arms when he was less than six weeks old.

On what would have been Sol-John’s 10th birthday, July 15, 2022, they, along with other family 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.

On an online fund-raising page set up by Kirstene to accept donations and spread word of the family’s story, she explained how she and Sol reacted when they heard of Willow’s diagnosis.

She said: “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.”

Though thanks to advances made in research and treatment of SMA, Willow, who lives in Irvine, is thriving - and Kirstene hopes that the fund-raising campaign she and Sol are undertaking will ensure that continues to be the case for many years to come.

She revealed: “Willow will need a lot of equipment/physiotherapy which the NHS doesn’t cover in under five year olds.”

The NHS did provide Willow with her wheelchair, though it’s not yet able to provide all of the extra support that Willow will need.

Kirstene and Sol, a former Greenwood Academy pupil, will include a touching tribute to Sol-John in next weekend’s event.

They are also behind a UK wide campaign to provide SMA testing at birth, something which is already standard in the USA with tests only costing around £3.

Anyone wishing to donate to the gofundme page, can visit:

For more on SMA, including awareness events and resources, see

Everyone at the Times is behind you in your efforts.