Rowing for Robbie
Donation protected
A team of friends came together to start a fundraiser to raise money and Awareness for Robbie Trimble and Epilepsy. We plan to Kayak both Upper and Lower Bann (80 miles) over the weeknd of 15th July 2022. There will be a group completing the entire distance along with a group who want to show support and join in at certain sections of the river.
What is KCNQ2?
KCNQ2 Early Onset Developmental and Epileptic Encephalopathy is a genetic disorder that causes seizures within the first days of life.
700 known cases World wide
1 in 26,000 chance of it happening
There is no cure for kcnq2
Here is a little bit about Robbie and what he and his family has been through.
Robbie started taking seizures in the first 24 hours of being born. He spent the first 3 months of his life in hospital fighting with tonic clonic seizures. This type of seizure caused Robbie to hold his breath and turn a dusky shade of blue/grey. At 3 months Robbie was diagnosed with a genetic mutation called KCNQ2. The genetic results show that Robbies mutation is "De Novo" something Robbie has developed himself and not something he inherited from either parent. Many seizure medications were tried and Robbie is now on 3 different medications and one Rescue medication. Thankfully these have brought his tonic clonic seizures under control. Unfortunately he still takes focal seizures daily. It will be hard to get control of all Robbies seizures. 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.
Robbie Vs KCNQ2
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Organizer and beneficiary
David Cromie
Organizer
Northern Ireland
Robbie Trimble
Beneficiary
