Family distraught as tragic tot dies three years after brother passed away from same genetic disorder

A couple have been left distraught after the death of their little girl less than three years after her brother died from the same genetic disorder.

Isabelle Cooper, three, sadly passed away in the early hours of September 19, less than a year after being diagnosed with the same rare genetic mutation as her sibling Alexander. He was also three when he died suddenly on Boxing Day 2021.

Their mum, Dr Emily Cooper, a lecturer at the University of Central Lancashire, said: “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.”

For nearly two years, little Alexander’s death was a heartwrenching mystery after there had been few signs anything was wrong. The day before he died, the three-year-old had celebrated Christmas and had been perfectly fine, spending the day opening presents and dancing with his little brother Freddie, reports the Mirror.

But the following day, Emily took Freddie for a walk and returned home to find emergency services outside the house. Alexander was rushed to hospital but died later that evening.

The family waited almost two years before doctors discovered Alexander had a rare genetic disorder, PPA2 mutation, with both his mother and father, Darren Bowes, carriers. This meant their three other children were also at risk of having the disorder and, tragically, Isabelle was affected.

Sharing the devastating blow last December, Emily said: “Everything is still so uncertain and new at the moment, we just watch and wait. 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.”

The family were gifted a defibrillator in case she had a sudden heart issue and they told how they were “armed with this knowledge” which meant they could do things to help protect her, including going teetotal and avoiding vinegar as well as any stomach bugs.

Emily had said: “Mostly, we just need to give her as happy and normal a life as we can, and take each day as it comes, & we’ll do just that. Be grateful for every day you and your children are healthy and happy. We know all too well how important that is. Please learn CPR and how to use a defibrillator. You might save a life like Alexander’s.”

Sadly, days after being admitted to hospital after a bout of vomiting, Isabelle died aged three on Thursday from the genetic disorder. A fundraiser has now been set up to support the family through this difficult time. You can find out more or donate here.