Toddler, two, with rare genetic mutation died three years after it claimed her brother, three, inquest to hear

A two-year-old girl from Lancaster who died from a rare genetic mutation just three years after the same condition has claimed her three-year-old brother’s death will be examined by an inquest 18 months later.

Isabelle Bowes died in September 2024, less than a year after she was diagnosed with the same rare genetic disorder as her brother Alexander.

Anne Dr., a lecturer at the University of Central Lancashire in Preston. Emily Cooper wrote about X at the time: ‘We are devastated to say that our beautiful Isabelle passed away in the early hours of this morning.

‘We are absolutely heartbroken. However, we ask that you all do not think about his death, but honor him by living his life as he did: fearlessly, joyfully and spontaneously.’

Alexander was just three years old when he died suddenly the day after Christmas 2021 after being “a little unwell”.

For almost two years Alexander’s death remained ‘unexplained’ after there was little sign that anything was wrong.

Alexander had spent Christmas Day opening presents and dancing to The Masked Singer with his younger brother Freddie, then two.

Alexander Bowes (pictured) was just three years old when he died suddenly after being ‘a bit unwell’ on Boxing Day in 2021.

But the next day, Emily took Freddie for a walk and returned home to find emergency services outside the house.

Alexander was taken to hospital but died later that evening.

Following his death, his parents began raising awareness for the UK charity Sudden Unexplained Death in Childhood.

The family had no answers about the cause of death for almost two years before doctors discovered that Alexander had the PPA2 mutation, a rare genetic disorder, and that both his mother and father, Darren Bowes, were carriers of the disease.

This meant that her other three children were also at risk of developing the disorder.

Tests revealed that Freddie and the couple’s then-unborn daughter were free of the mutation, but Isabelle was affected.

In December 2023, mum Emily posted on We must hope that he will be one of those living a largely normal life.’

He started carrying a defibrillator with him at all times in case Isabelle had a heart attack.

When Isabelle was diagnosed in 2023, Dr. Cooper told ITV News: ‘Someone said Alexander was having a seizure.

‘When I went to the hospital, I was told that my husband performed a heroic heart massage at home alone, and they managed to restart his heart, but they couldn’t stand it.

‘I saw them withdraw CPR and he died.’

Following Isabelle’s death in 2024, family friends set up a JustGiving page and asked for donations to support them.

The page read: ‘It is truly heartbreaking to share that Emily and her family have suffered yet another devastating loss with the passing of their two-year-old daughter, Isabelle.

‘Isabelle had PPA2 deficiency, which can lead to sudden cardiac death in babies and teenagers. ‘Emily also lost her three-year-old son Alexander to the incident in 2021.’

The inquest into Isabelle’s death will open at Preston Coroner’s Court on March 19 and will be adjourned.