Luton mum organises charity ball in memory of her son Kai who would have been seven in June

Luton mum Leonie Appleby with her son Kai who died aged just eight weeks old. He was diagnosed with Edwards Syndrome and Leonie is organising a fundraising ball which will coincide with what would have been his seventh birthday

A Luton mum who lost her firstborn son, aged only eight weeks, to a condition she’d never heard of is organising a charity ball to fundraise for Emily’s Star, the charity that has helped her through her grief and ever since.

Leonie Appleby’s son Kai was diagnosed with Edwards Syndrome (trisomy 18) when he was born six weeks early, in April 2017, after an emergency C-section.

She recalls: “He was rushed to the L&D’s NICU and initially it was thought he had Downs Syndrome. They did a genetic blood test and we were told he had Edwards Syndrome. It was a big shock – none of us had ever heard of it.”

Edwards Syndrome is a congenital condition arising from the presence of an extra copy of chromosome 18 which can result in impaired development and is typically fatal within the first two years of life.

Little Kai spent six weeks in the neonatal unit where he was christened with his whole family around him. He died two weeks after being taken home.

Leonie, 27, admits his death affected the family massively: “Even though we were told to expect it, it still doesn’t prepare you for when it actually happens. The grief didn’t really hit me until around two years ago, when I’d find myself crying at random times of the day, looking through Kai’s pictures and talking about him more.

"We all dealt with it in different ways. Initially I stayed strong but it hit some of the others immediately.”

While Kai was in the NICU, Leonie had been given an Emily’s Star neonatal box which included items like premature baby clothing, bonding aids and toiletries for parents.

The former Stopsley High pupil says: “They have a group of people who knit premature clothing. It was amazing for us as everything we’d bought Kai was new-born size. He had nothing that fit him until we received our Emily’s Star box.”

The charity – which also supports families of children aged up to 25 with complex needs, disabilities or life-limiting conditions – was started by Katie Mainwaring when her daughter, Emily, died after being diagnosed with Edwards Syndrome.

Katie says: “The 26 days she was with us were the most valuable and precious of my life and I owe so much to the nurses who helped me have those days with Emily.”

And so the charity, named after her daughter, was born seven years ago.

Leonie says: “Emily’s Star helped me from the minute I found out Kai had Edward’s syndrome – and they’re still here for me now.

"They’ve recently been helping with my five-year-old daughter Skyla, who’s started asking questions about her brother in heaven.”

Leonie, who lives in Lewsey Farm, asked for donations for Emily’s Star at her son’s funeral and is now continuing her fundraising with Kai’s Charity Ball on Saturday, June 15, at Crawley Green Social Club.

And she’s been overwhelmed by the support from local businesses.

In addition to the raffle, there will be a name-the-teddy competition and a bonus ball.

The black tie event starts at 6pm. Tickets cost £20 and are available from Leonie on 07951 116807.

All money raised on the night will be donated to the charity.