Rachel’s surgery is everything we could have hoped for – she could be seizure free for life

Rachel’s surgery is everything we could have hoped for – she could be seizure free for life

3 April 2024

AFTER years of worry and months of fundraising, Killyleagh’s bravest three year-old has finally received her life-changing surgery.

On March 19, Rachel Gribben travelled with her parents, Katie and John, to the city of Lviv in western Ukraine.

Rachel was diagnosed with Focal Cortical Dysplasia of the right lobe of her brain – a severe form of epilepsy – in October 2022.

Since then the littler warrior had relied on medication and suffered from seizures everyday. Katie said that Rachel’s medical team in Manchester believed that the toddler’s seizures are generalised and not focal, so they would not carry out the surgery.

Realising that Rachel’s quality of life would not improve if nothing was done, Katie sought out advice from epilepsy support groups in the UK and was put in touch with Dr Tomycz, a surgeon based in the Epilepsy Institute of New Jersey, who believed that Rachel would benefit significantly from surgery.

Last October, Katie began to organise a fundraising campaign so that Rachel could receive the life-altering surgery.

“I’m not sure I have the words to describe the journey we have been on as a family,” she said.

“To think that we have this over us now is just incredible – it still doesn’t feel real.

“When Rachel went into surgery, it was absolutely nerve-wrecking,” Katie continued.

“It was the longest day of our lives – she spent 11 hours in surgery – I’ve never experienced a worry like it and I hope I never do again.

“The doctors and staff were absolutely incredible. When you think about what Ukraine has endured these last two years, the people were so friendly and so helpful – we didn’t want for anything.”

Initially, Rachel was scheduled for several surgeries and numerous tests. The aim of the surgery was to remove the part of the brain where the lesion was causing the seizures.

The surgery was a massive success, exceeding the expectations of both the staff and Rachel’s parents.

“It’s everything we could have hoped for and more,” Katie said. “The doctors did a couple of scans after the first surgery. They realised they had removed the lesion completely.

“They explained to us that it was such a success. There is an 80% chance that Rachel will be seizure free for the rest of her life.”

Katie continued: “It’s emotional even thinking about it. For years she has been left fatigued by her medication. Her seizures have prohibited her development and she has had to wear a helmet to keep her safe while she was out and about . She will now be able to do the things any other three year-old should be doing.

“The doctors were so impressed with her – she was up running about a couple of days after the surgery. You wouldn’t have thought she’d even had the surgery.”

Last October, Katie set up a go Facebook page to document Rachel’s journey. She intends to keep the page to campaign and advocate for others having access to the surgery in the UK.

“There’s so much work that needs to be done,” Katie explained. “We are the first family in the world to travel to Ukraine to get this vital surgery, but it needs to made available for families at home.

“We will come back in a year’s time for more scans, but we are so looking forward to the future.

“I just want to thank everyone for their donations. We have seen so much kindness and the generosity of our community, strangers who have helped us fundraise and the people in Ukraine has been so humbling.”

She added: “It is something John and I and Rachel’s two big sisters, Rhiannan and Robyn, will never forget and it has already changed our lives.”