A two-year-old girl from Lancaster who died from a rare genetic mutation just three years after the same condition claimed her three-year-old brother’s life will have her death examined 18 months later at an inquest.
Isabelle Bowes died in September 2024, less than a year after being diagnosed with the same rare genetic disorder as her sibling, Alexander.
Mum Dr Emily Cooper, a lecturer at the University of Central Lancashire in Preston, wrote on X at the time: ‘We are devastated to say that our beautiful Isabelle died in the early hours of this morning.
‘We are absolutely broken. However, we want you all not to think of her death, but to honour her by living life as she did: fearlessly, joyously & spontaneously.’
Alexander was just three years old when he died suddenly, having been only ‘a bit unwell’ on Boxing Day in 2021.
For almost two years, Alexander’s death went ‘unexplained’ after there had been few signs that anything was wrong.
Alexander had spent Christmas Day opening presents and had been dancing with his little brother Freddie, then two, to the Masked Singer.
Isabelle Bowes (pictured) passed away a year after she was found to have the same type of genetic heart disorder as her brother Alexander
Alexander Bowes (pictured) was just three when he died suddenly after being ‘a bit unwell’ on Boxing Day in 2021
But the following 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 started raising awareness for the charity Sudden Unexplained Death in Childhood UK.
The family had no answers over the cause of his death for almost two years before doctors discovered Alexander had a rare genetic disorder, PPA2 mutation, with both his mother and father, Darren Bowes, carriers of the condition.
This meant their three other children were also at risk of having 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 shared on X: ‘She is thankfully symptomless so far, & we’ve been told that children in families who have inherited this are affected very differently. We have to hope that she’ll be one of those who largely live a normal life.’
She had begun carrying around a defibrillator at all times in case Isabelle ever had a cardiac arrest.
At the time of Isabelle’s diagnosis in 2023, Dr Cooper told ITV News: ‘Somebody said Alexander had had a seizure.
‘I got to the hospital and was told my husband had done a heroic job of CPR at home, on his own, they’d managed to get his heart going again, but they just couldn’t sustain it.
‘I watched them withdraw CPR and he died.’
Following Isabelle’s death in 2024, friends of the family have set up a JustGiving page, asking for donations to help support them.
The page read: ‘It is truly heartbreaking to share that Emily and her family have suffered 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 infants and young people. Emily also lost her three-year-old son Alexander to this in 2021.’
An inquest into Isabelle’s death will be opened and adjourned at Preston Coroners’ Court on March 19.
