Family’s vow to help others in honour of their brave little boy

Baby Edward Luckett with his older sister Maisie, right
Baby Edward Luckett with his older sister Maisie, right

A family who lost their baby boy to a rare condition have raised more than £6,000 for charity in his memory.

Edward Luckett was born on September 20, 2012 weighing 7lb 2oz, and proud parents Rachel and James took him home to his big sister Maisie, then three.

The tot was diagnosed with spinal muscular atrophy type 1 when he was six months old, and it was then that the Lucketts discovered the Jennifer Trust – now called SMA Support UK.

The genetically-inherited neuromuscular condition which causes the nerve cells between the spinal cord and muscles to deteriorate, meaning the muscles wither due to inactivity.

Sadly, Edward’s condition worsened and he passed away in his mother’s arms on August 14 last year.

Rachel, of the High Street, Thame, said: “No words can describe the loss we feel. The pain will never go away but we are glad of the time we had with our baby boy.”

The family and their close friends pledged to raise as much as they could in Edward’s memory over one year in aid of SMA Support UK.

Now, after a year’s worth of pamper nights, school cake sales and sponsored silences, the campaign has raised £6.683 in total. Rachel said: “We are incredibly grateful to have achieved our target.”

August is SMA Awareness Month. Visit the charity’s website here for more information.