An 11-year-old girl is fundraising in memory of her cousin who died aged just 18-months-old from a genetic disorder.

Tommy Keen was a fit and healthy little boy when in April he suffered a sudden seizure that would later leave him in intensive care.

Tommy was diagnosed with an incurable condition called mitochondrial disorder and on July 1, he sadly passed away in hospital from the disease.

The toddler's family are determined to make his legacy a lasting one but to also raise awareness of the disease which can affect children and adults.

Watford Observer:

Tommy's cousin Annie, who lives in Bushey, has already raised more than £1,300 for the Lily Foundation, which is a charity that funds research into mitochondrial disease and other metabolic disorders.

Annie said: "I wanted to help because Tommy was a great kid. Other children might get the same illness so I want to help them so they don't suffer like Tommy did.

"In August, I'm going to be doing 300,000 steps and I'll also be visiting Stonehenge with Tommy's grandma. I want to thank everyone who has donated. I didn't know I would raise this much."

Tommy's auntie Dani Evans said: "We're so proud of Annie. She is such a naturally kind and giving kid.

"Tommy was such a gorgeous, cheeky kid. It’s been very hard for everyone but we are just so proud that everyone has rallied together."

Watford Observer: Annie, her younger sister Jasmine, and Tommy Annie, her younger sister Jasmine, and Tommy

Incurable mitochondrial disease occurs when the “mitochondria” which are the tiny organelles found in almost every cell of the body fail to produce enough energy for cell or organ function.

It is a complex disease that is often maternally inherited and every person is affected differently. Tommy was diagnosed with a rarer and more serious POLG related mitochondrial disease.

Dani continued: "I think it is important to highlight, in Tommy’s case in particular, everything happened quite quickly. We learnt that both of Tommy's parents have the genetic trait which they didn't know about.

"He suddenly developed seizures one night in April. For other children, they might not have a serious case, but it is worth being mindful."

Click here to learn more about the Lily Foundation and here to donate to Annie's Just Giving fundraising page.

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