A mom has spoken of her grief after two of her sons were diagnosed with a rare condition that could mean they don’t live past their teens.
Sarah Dodkin and her husband Ben were devastated after an eye test revealed their now 8-year-old son Finley was diagnosed with CLN3 juvenile slat disease.
Degenerative neurological disease is extremely rare and affects vision, memory, physical and mental abilities and dramatically shortens a person’s lifespan.
The couple had their two other sons, Arthur, now 6, and Harrison, now 4, tested.
And to their horror, their youngest was also diagnosed with the disease. It is believed that there are only up to 40 children living with it in the UK.
Now a fundraiser has been set up to help fund a wish list for the brethren of things they want to do together.
Wisbech’s mother of three said: “As parents we were absolutely devastated and couldn’t believe that from a simple eye test in November 2016, seven months later, our lives and our future had been totally upset. “
She added: “Knowing that your children are not going to live the life you imagined and hoped for is heartbreaking, but now we think more of the days today.”
(Photo: Sarah Dodkin)
The symptoms have not yet manifested in Harrison, but it is believed that, like his brother, he will lose his sight.
Parents have agreed to protect their children from the devastating reality as much as they can and are now focusing on the time the family has left together.
“It took a long time with the incredible support of our close family and friends to come to terms with this,†said the graduate teaching assistant.
“We are now focusing only on making every day count for our three boys and trying to make life a little easier for the other families who have also been struck by this extremely rare and devastating disease. “
(Photo: Sarah Dodkin)
Parents are especially grateful to the Batten Disease Family Association (BDFA), which Sarah says has been “amazing” in helping them understand the disease and in introducing them to others going through a similar experience.
As a result, they are looking to raise money for the charity.
Nine male family friends will take on the grueling mission of cycling from Amsterdam to Wisbech.
(Photo: Sarah Dodkin)
A JustGiving page was created to support the idea of ​​fundraising, with the money to be shared between the association and the family.
Explaining the idea, Sarah said, “This will hopefully raise awareness about the charity and the incredible work it does with such a small group of dedicated people.
“I hope we can support the work that family workers do to make every day count. “
(Photo: Sarah Dodkin)
Half of the family will go to help fulfill all a wish list put together by the brothers of things they want to do together.
Family friends do something similar with their children to create a sense of normalcy for the three brothers.
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The mother added, “On a more personal level, the boys have a wish list that we would like to check off some things to create some amazing memories for all of them.
“There’s climbing the O2, feeding a sloth, taking a helicopter ride, seeing George Ezra, kissing a dolphin and seeing the Lion King in the West End.
“There are a lot of other things, as you can imagine. “
To support the page and find out more about the family, click here.
