Belfast girl, 4, diagnosed with rare disease which could lead to ‘childhood dementia’

Edie Dorrian was diagnosed with the condition last year

The parents of a young East Belfast girl diagnosed with a rare degenerative disease described as leading to ‘childhood dementia’ have said their focus is on making happy memories together and spending as much time with her as possible.

When Edie Dorrian was born in January, 2021, happy and full of life, her proud parents George and Lauren never imagined the difficulties that she would face in just a few years time.

For the first few years of her life George and Lauren did not suspect that Edie had any issues other than possible autism due to her being non-verbal, and she was a very lively young girl who loved running around her house and garden, playing with her older brother and parents.

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However, in 2024, she suffered a seizure and was diagnosed with epilepsy, with further genetic tests being carried out in the weeks that followed. These eventually discovered that Edie had developed a heartbreaking and rare degenerative disease, CLN2 Batten Disease that causes the steady decline in her motor skills and vision. It has been described as leading to ‘childhood dementia’.

Edie’s parents have been warned that the four-year-old may not reach the age of 11 due to the disease with George and Lauren now dedicating themselves to giving her the best life, spending as much time as possible with her making happy memories.

Speaking to Belfast Live, Edie’s dad George, former Belfast City DUP councillor, said that the past few months have been very difficult for their family as they come to terms with Edie’s diagnosis but he and Lauren are determined not to dwell on things and aim to ensure every moment with their beloved daughter is a special one.

He said: “From the moment that she was born Edie has been such a happy girl who has been bursting with life. She just loved running around our house and garden laughing away and we never imagined that she would be in a position like this.

“While we had our concerns that she might have autism as Edie was non-verbal and hadn’t started speaking, she was living a perfectly normal life until she suffered her seizure. It was only after genetic tests were carried out when investigating possible epilepsy that they discovered she had this rare condition which only affects about 50 children across the UK.

“There are treatments available for the condition, but there is no cure, and due to how hard the treatment could be on Edie without providing much benefit, we have decided against it. We don’t know how much time we will have with her and want to make sure that everyday she has, is a happy one without constantly going back and forth to the hospital, which she does enough of already.

“The support that we have received following Edie’s diagnosis has been incredible, particularly from Longstone Special School in Dundonald, who have gone above and beyond for her, and her doctors and nurses at the Royal and Ulster hospitals.”

In order to help Edie over the coming years, the Dorrian family will need certain equipment, such as specialised wheelchairs and walkers, that can prove to be quite expensive.

Edie’s aunt Sarah Dorrian has recently launched a fundraiser in order to help purchase some equipment for her niece and will be taking part in a skydive in March from 15,000 feet.

George continued: “My sister Sarah is very keen to help us out and loves to take on difficult challenges for charity. She said that she has always wanted to jump out of a plane and skydive and said that she would do so in order to raise some funds to help Edie over the next few years.

“We are very grateful for her support and any equipment that we are able to get for Edie we will donate to Longstone School when she is not able to use it anymore so that many other children can also get the benefit.”

If you would like to donate to Sarah’s fundraiser to help her niece Edie please follow this link.

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