A MARKET for small businesses is set to help a young girl make memories with her family after she was diagnosed with a rare condition. 

Five-year-old Addy Clarke suffers from a regressive brain disease called Batten’s disease, a rare illness that affects a child’s central nervous system. 

Her family was told last year that Addy could die before her 10th birthday. She is undergoing regular enzyme injection treatments at Great Ormond Street Hospital in London, which can delay the effects of the condition.

Touched by the story, Lydia Rodger, from Blunsdon, decided to set up an event at Freshbrook Church on June 26 to support the family. 

She said: “She is my friend’s niece and as a mummy of a daughter the same age as Addy, her Batten adventure is really close to my heart. 

“Addy is a gorgeous, courageous girl and is an inspiration to us all, which is why I have decided to raise money for her and her family.”

The money raised during the event will help the family get special equipment for Addy.

The event will feature local businesses, a café, and a drive through car wash. 

Addy’s dad David, from Stratton, said he was humbled and touched by the support they received from friends, family, and strangers even during the pandemic. 

He said: “We have always tried to help our community and people around us and it’s amazing to have that in return in particularly during the pandemic. People were still willing to give to our cause, and we can’t thank people enough for getting behind us. 

“The pandemic has been extremely hard, Addy was diagnosed in September 2020, so we haven’t been able to create many memories at all.

“We had some support from family, but again during the pandemic it’s been very difficult because we were not allowed in each other’s houses, so we felt very isolated and very alone.

“Our friends and our church have been amazing, sending meals around to just help us and lots of people have been generous with money and sending gifts which has been extremely kind.”

Addy is one of just 100 children in the world to be diagnosed with Batten’s disease. Her voice, sight, and control of her limbs will slowly be affected.

Her family first  noticed the signs  when Addy started day dreaming. In May last year she suffered from a seizure and had a near-death experience.

David said: “She just stopped breathing, her lips went blue, she went limp and that also happen in June and we spent a month in hospital, while the doctor tried to see what was happening, they did all kind of blood tests, MRI tests and finally a genetic test which came back with the diagnosis of Batten disease.”

David, 35, recalled the day he received the news. 

He said: “I remember being in the doctor office and the doctor all he said was ‘I am very sorry it’s Batten disease'.

“And I didn’t know what Batten's disease was, but I knew it wasn’t good, it was at that point the doctor said ‘I want you to get yourself a bag together, because you need to go over to Great Ormond Street and you need to start create memories because you don’t know how long you will have her’.”

He added: “It’s devastating, every parent has dreams for their children, but my dream is to walk her down the aisle on her wedding day and I would never be able to walk with her. 

“She’s almost wheelchair bound now.”

To cover the costs of paying for the life-extending therapy, the regular trips to Great Ormond Street Hospital and the move to another house, the family hopes to raise £98,000. They have already raised more than £76,362. 

Visit uk.gofundme.com/f/support-for-addy-and-her-family and to follow Addy’s journey on Facebook visit: https://www.facebook.com/AddysBattenAdventure

For more about the market which is set to start at 11am visit: https://www.facebook.com/groups/820377162047475