A FAMILY has been left ‘heartbroken and inconsolable’ after the tragic passing of a brave 13-year-old girl.

Connie Elson's mum Nicola, from Cark, shared the devastating news that the youngster died in a social media post.

“We are utterly heartbroken and inconsolable at the loss of our beautiful Connie,” said Nicola. “We take comfort from the fact that she is no longer in pain or surrounded by noisy machines, tubes and wires. She fought so hard and so bravely, especially over the last 12 months.”

Connie had the condition metachromatic leukodystrophy (MLD).

Her brother Joe was also diagnosed with the same condition in 2014 but, as it was diagnosed early, he underwent treatment to prevent it from progressing.

According to the NHS, the most common form of MLD usually develops in babies younger than 30 months and can lead to loss of sight, speech and hearing, as well as difficulty moving, brain impairment, seizures, and eventually death.

Nicola said her daughter was courageous in battling her ‘monstrous disease’.

She said: “You fought courageously, despite the exhaustion and effort. You are our hero, our lion heart and our world. Fly high my beautiful girl, we love you to infinity and back again. Always”

Earlier this year gene therapy treatment, known by its brand name Libmeldy, was recommended for use in the treatment for metachromatic leukodystrophy (MLD).

Nicola said: “Not only did Connie raise thousands of pounds for charity despite her illness but her story played a significant part in making Libmeldy Gene Therapy a reality here in the UK.

“Very few will have an impact on the world like Connie, whose legacy lives on with all future children that will now have access to a treatment for MLD as a result.

“She was a brave, courageous warrior, who touched the heart of all who had the pleasure of knowing her and she lives on in her bother and sister’s smiles.”

Connie’s service will take place at Beetham Hall Crematorium on August 2.

A celebration of her life will then be held at the Netherwood Hotel in Grange. The dress code is bright and colourful, and if possible, a touch of pink.

It is asked that there are family flowers only but for those who wish to contribute, donations are being gratefully received in memory of Connie towards a wheelchair inclusive roundabout at Allithwaite Playground.

Cheques are payable to The King George V Jubilee Playing Fields and may be sent to Alan Postlewaite, Funeral Director, Windermere Road, Grange Over Sands, LA11 6EG.