Fife family raising awareness and funds in memory of Freddie

Jordan Hamilton, pictured with her daughter Frankie, has organised a fundraiser in memory of son Freddie Quinn, who died in November 2018, aged just 20 months old. Pic: Fife Photo Agency

Freddie Quinn sadly passed away in November 2018, aged 20 months, from Niemann Pick disease type A, a genetic condition which affects just one in ten million people.

Now, mum and dad, Jordan Hamilton and Ross Quinn, are preparing to host a special fundraiser just a week before his third birthday for Niemann Pick UK (NPUK), which raises awareness, provides support and information and facilitates research into potential therapies.

Jordan (22), said: “Freddie was born with the condition but wasn’t diagnosed until just after his first birthday.

Freddie Quinn died in November 2018, aged 20 months from Niemann Pick disease type A.

“In February 2018 he was ill with a respiratory virus and it just wasn’t getting better.

“He was diagnosed with Niemann Pick type A on March 30, 2018, which means there was a harmful amount of lipids building up in his liver, spleen, brain and other vital organs. The condition mainly affected Freddie’s lungs causing him a lot of respiratory problems, so he was on two litres of oxygen 24/7 and was fed through an NG tube down his nose.

“Freddie passed away on November 23, 2018.

“NPUK was the charity I learned the most from online when doing research into the condition.

Fundraiser Caitlin Christie with Jordan Hamilton and her little girl Frankie. Pic: Fife Photo Agency

“We also received support from Rachel House in Kinross.

“And we had great support from our community nurse David – we could not have done it without him. He was our rock during the whole of Freddie’s short, but extremely happy, life.

“Freddie was a very happy, smiley little boy who never let anything get him down, he was always smiling and laughing no matter what he was going through and although the story of Freddie is very sad, his life was not.

“He was so happy and loved by everyone and still is.”

The fundraiser on Saturday, March 7, takes place at St Columba’s Church in Glenrothes and will include stalls, a tombola, raffle and disco.

Jordan added:“It is mainly to raise awareness for this devastating disease and to hopefully show our support to other families going through the same, while raising funds to ultimately help NPUK to help families like ours.

“Our family and friends, including Freddie’s little sister Frankie, are taking part in a sponsored tartan warrior race too.

“We’d like to thank local businesses who’ve been really generous with donations.

“Thank you also to my friend Caitlin Christie, who has been a massive help in organising the fundraiser.”