Killyleagh girl Rachel (3) ‘doing fantastic’ following pioneering brain surgery

Killyleagh girl Rachel (3) ‘doing fantastic’ following pioneering brain surgery

24 April 2024

A BRAVE Killyleagh girl is “doing fantastic” and preparing to return to pre-school today after having extensive brain surgery in Ukraine.

Little Rachel Gribben spent weeks at St Nicholas Children’s Hospital in Lviv, despite the war in the country.

In October 2022, the three year-old was diagnosed with a severe form of epilepsy, causing her to have multiple seizures daily, causing some of her development to regress. 

Her mum Katie, explained Rachel was not a candidate for surgery in the UK because tests showed her seizures were coming from more than one area of the brain.

“I wasn’t willing to accept that this was going to be Rachel’s quality of life,” Katie said.

“I was in touch with several UK 

epilepsy support groups and some of them recommended Dr Tomycz, a surgeon who was based at the Epilepsy Institute of New Jersey but operated in Ukraine as well.

“He believed that Rachel would benefit significantly from the surgery and that it would improve her quality of life.”

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

After months of fundraising and raising £20,000 for the surgery, Rachel and her parents, Katie and John, travelled to western Ukraine to undergo the surgery.

Having spent seven hours in theatre, the paediatric neurosurgeons successfully removed the part of Rachel’s brain that was causing the debilitating seizures.

“It was the longest day of our lives,” Katie recalled. “I’ve never experienced a worry like it and I hope I never do again. The doctors and staff were absolutely incredible,” Katie said.

“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.”

Since Rachel had her life-changing surgery four weeks ago, she has not had one seizure with the doctors claiming there is an 80% chance she will live the rest of her life seizure free.

“Rachel was the first child to have the surgery from outside Ukraine,” Katie said. “They got every last bit of the lesion that was causing the seizures and it was a huge success – we can already see the difference in her.

“She’s able to play with her sisters and has started to speak which is something she couldn’t do before the surgery.

“Her older sister Robyn told her to be quiet and Rachel told her ‘to be quiet’ back. We are just so happy that the surgery was a success and we are still getting use to our new normal. 

“I find that I am having to remind myself that she isn’t at a constant risk of having a seizure and that is beyond a massive relief.”

Since returning to Killyleagh, Katie and her family have been speaking about Rachel’s experiences and plan to campaign to educate families who suffer with epilepsy about their options outside the UK.

“Yesterday I spoke to a family from Co Clare who are going through the same worries we went through,” Katie explained. “It’s great that Rachel’s story has reached other people and it is nice to speak to people about similar experiences.”

Katie is now working with various hospitals to set up a website that allows doctors to access medical files from other hospitals so they can give a possible second opinion.

The aim is to help families navigate a forum where they can access opinions from outside the UK regarding epilepsy treatment,

“We just want to make it as easy as possibly for families because we know difficult it can be,” Rachel said. “We are just in the process of figuring out how it will look.”

Katie added: “We have been on an incredible journey and I’m grateful ours has a happy ending.

“I just want to once again thank everyone in the community who donated and fundraised for Rachel because they are the heroes in all this.

“We have seen so much kindness and it is something John and I and Rachel’s two big sisters, Rhiannan and Robyn, will never forget.”