Little Alexander McMillan died last year after living his short life with a genetic condition called WWOX.
Little Alexander McMillan who died last year after living with a genetic condition called WWOX(Image: Handout / Rainbow Trust Children’s Charity)
An Ashington mum is determined to share the story of her “rare little boy” who died last November aged just two and a half. Little Alexander McMillan had a genetic condition called WWOX which affects the brain – the average life expectancy is just four years.
But his mum Emma Dunn told ChronicleLive how he had been a “lovely, cheeky little boy” and that raising awareness of his illness and the charities that supported her family felt vital to them. In September, Emma and daughter Bella will return to the Great North Run to take on the “mini” event again.
A year ago Alexander was there too – and Emma said they all loved the day and had vowed to come back “every year”. At the event they will be fundraising for the Rainbow Trust Children’s Charity – which supported them throughout Alexander’s short life.
Emma called on people to join in with #teamalexander as she put it, and support the charity. She said: “Alexander always wanted to be famous so this is a chance for us to fulfil his dream – let’s make Alexander famous!”
Speaking to ChronicleLive, Emma recalled the heartbreaking diagnosis and what Alexander had been through. She said: “He seemed healthy when he was born. A lovely, cheeky little boy who loved a sleep. But at the age of about three weeks he started to have seizures. That took a lot of fight. We’d take him in to hospital and I’d be always asked the same questions – ‘is he always this stiff and tense?'”
Alexander’s six week scan was delayed as he had developed RSV (respiratory syncytial virus) – but when he eventually had that a few weeks later, medics decided to check him out further. And at around three months old, Alexander was diagnosed with a rare genetic condition called WWOX that affects the development of the brain.
Litttle Alexander McMillan and sister Bella at 2024’s Mini Great North Run(Image: Handout / Rainbow Trust Children’s Charity)
Emma added: “It was absolutely horrific. Being told that your lovely little boy is not going to survive – it’s just so hard to deal with.” But she explained that with Jaimie’s support they had been able to make all manner of incredible memories.
“We met Jaimie in January 2023 and obviously she just fell in love with Alexander straight away from the get-go. She has supported us through such a lot. The charity and Jaimie have been amazing. She’s been there for us all, she’s helped support Bella my daughter. They can help with everything.
“We did the mini run last year and absolutely loved it. Bella loved it, the atmosphere was amazing, Alexander loved it. And we said we would do it every year. It’s important for us to raise funds for the Rainbow Trust, to spread awareness and to keep Alexander’s story alive.
“We want to get his story out there as he was such a rare little boy. We were told he was one of 16 who had it in the country – and it’s something that no-one has ever heard of.
“We wouldn’t have had half the memories we have had without the charity. For example Alexander’s first birthday – we were able to take him to Whitehouse Farm and we had the farm to ourselves. But then what happened was Jaimie suddenly freaked out because a goat was nibbling my daughter’s ear!”
The money raised will go towards the Rainbow Trust Children’s Charity’s work supporting families with children who have either life-threatening or terminal illness. The idea is to make sure they are able to make the most of however much time they have together.
Oonagh Goodman, director of fundraising and marketing at Rainbow Trust, said: “The Great North Run is one of Rainbow Trust’s biggest events of the year and we are extremely grateful to Emma and Bella for fronting the appeal calling for people to support #TeamAlexander – come along on the day and cheer them on and make Alexander famous.
“And please click here to donate. All money raised from the event will enable families with a seriously ill child to make the most of the precious time they have together.”
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