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Kelly and Jason's Fundraising Story

23 March 2017

Kelly and Jason's Fundraising Story

Kelly and Jason's daughter, Lily-Mae, had SMA and sadly passed away in 2011. The couple continue to fundraise tirelessly for SMA Support UK, including running their annual social media campaign 'Pink Lippy Day for SMA' where people paint their lips pink, take a selfie, make a donation and nominate three friends to do the same. They share their story below, explaining why they continue to raise funds and awareness of Spinal Muscular Atrophy.

Why do you want to fundraise for SMA Support UK?

Jason and I decided to fundraise for SMA Support UK to provide help for families affected by SMA following the diagnosis and subsequent loss of our daughter Lily-Mae aged 23 months. Research is a big part for us but it is also just as critical to help families, especially when they are newly diagnosed.

What have you done to raise funds for SMA Support UK?

We have done many activities including online auctions, a sponsored Superhero walk and our personal favourite #PinkLippyDayForSMA.

What did you particularly enjoy about raising funds for SMA Support UK?

For us there is so much more than just raising funds. A crucial part of Lily-Mae's legacy is to raise awareness of Spinal Muscular Atrophy so that people don't just think about a baby milk when they hear SMA (#SMANotJustABabyMilk). The most astounding thing to me is that almost every family touched by SMA says the same thing "Up until diagnosis we had never even heard of SMA". For a condition with such devastating consequences this is definitely something that we aim to change.

How much have you raised?

At present just over £10,000.

Do you have plans to fundraise again in the future?

Absolutely. We are hoping to grow and expand #PinkLippyDayForSMA as we really believe as a fundraiser it has great potential and we will continue to raise awareness and funds in Lily-Mae's memory.

This year's Pink Lippy Day For SMA is taking place on Friday 7th April. Find out how you can get involved on their Twitter and Facebook pages.