Just 24 hours after being welcomed into the world, little Robbie Trimble began taking seizures, causing him to hold his breath and turn an alarming shade of blue/grey.
It wasn't until he was three months old, that his terrified parents Stacey and John were told that Robbie suffered from a genetic mutation called KCNQ2, also known as Early Onset Developmental and Epileptic Encephalopathy.
The Rathfriland tot is one of only 700 cases of the condition known worldwide.
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With little known about the rare form of epilepsy, the family has no idea what the future holds for their 'precious son'.
Mum Stacey explained: "The genetic results show that Robbie's mutation is 'De Novo', which is something Robbie has developed himself and not something he inherited from either parent. Many seizure medications were tried and Robbie is now on three different medications and one Rescue medication.
"Thankfully these have brought his tonic-clonic seizures under control but unfortunately, he still takes focal seizures daily.
"It will be hard to get control of all Robbies seizures."
Determined to support them and Robbie, a group of friends has come together for a fundraising event to help the family.
David Cromie, who was Best Man for Stacey and John on their Wedding Day said they want to do all they can to support their friends.
"The condition can affect just 1 in 26,000 people so no one really knows the outcome of how Robbie is going to be as he gets older, there is no real prognosis, so we as their friends wanted to raise money for them as we know they might have extra costs to help Robbie at home as he gets bigger."
David continued: "When we suggested what we were doing for the family Stacey broke down, she couldn’t believe it and she didn’t really want the money themselves, but we want to do it for them.
"The family also want to make a donation from the funds raised to Daisy Hill Hospital where Robbie was born and that is their go-to place when Robbie needs care, so that is where some of the funds will go as well.
"It’s a scary time for them because there is so much uncertainty around Robbie’s condition so we want to do all we can to help and support them, whilst raising awareness too for the condition."
The group has set themselves the challenge of kayaking both Upper and Lower Bann, a total of 80 miles over the weekend of 15th July 2022.
They have been training hard for weeks now and David admitted they don't have a huge amount of experience so they are giving it their all in preparations.
He said: "There are six or seven of us who are doing the full 80-mile row, and a few others are going to be joining in and doing certain stages like a relay team. Darren Trimble who is another friend of the family came up with the idea to do the row, He is always out fishing around the Bann and always interested in the river and said he would love to Kayak the river, so none of us are experienced really.
"I’ve had a kayak since I was 15 or 16 but it was something you were only ever on twice a year when we were younger so there is a lot of practice going on. We are treating it seriously, almost like we are doing the Belfast marathon and you have to because it’s not going to be easy. We just wanted to do something different."
David added: "Robbie is a beautiful little boy with the most infectious cheeky smile. We do not know what the future holds for this precious boy but we know all the money raised will be a massive help to him."
If you would like to help the family with their fundraising you can do so here, or you can follow Robbie's story on Instagram and Facebook.
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