A Christmas Without Seizures

Meet Angus (17), an inspirational teenager who is gearing up for a very different Christmas this year – his first without seizures in 13 years thanks to life-changing new epilepsy surgery.

Angus was diagnosed with epilepsy at four years old. The condition has affected his whole childhood, and he has had at least one seizure every week since. 

Now, thanks to pioneering new laser technology brought to the capital via a partnership between the Welch Trust, ECHC and NHS Lothian, Angus’s dream of having no seizures for Christmas may finally come true. 

Ten weeks ago, Angus became one of the first young people in Scotland to have MRI-guided Laser Interstitial Thermal Therapy (LITT) surgery – a minimally invasive treatment which uses a laser to remove the brain tissue causing seizures. 

For the past 13 years, Angus has had seizures at Christmas time. I can’t even put into words what it means to him, and all our family, for him to be seizure free for Christmas this year.

- Nicki

Mum Nicki said: “Our lives have been consumed with Angus’s epilepsy since he was five. He has been on lots of very heavy medication, had wires in his head, brain stimulation, so many tests and scans. 

“The build up to him having a seizure would last a few days, then after the seizure it would take another couple of days for him to recover, so I don’t think he’s ever actually had a normal day. He would say, ‘I just want to get rid of my epilepsy and get on with my life.’ 

“Of course, it was nerve-wracking Angus being only the second young person in Scotland to have the surgery, but we were elated that it was an option. The process was absolutely mind-blowing and recovery was fast. You’d never know he’d had brain surgery. It’s incredible this is now available in Scotland. It’s going to change so many lives.

“For the past 13 years, Angus has had seizures at Christmas time. I can’t even put into words what it means to him, and all our family, for him to be seizure free for Christmas this year. He’s a remarkable boy who has shown so much resilience. His future is looking so bright, and we’re incredibly proud and excited for him.” 

The LITT precision technology, now available at Edinburgh’s Royal Hospital for Children and Young People (RHCYP), reduces this surgery time to two hours, is much less invasive and has a shorter recovery time. 

Dr Jothy Kandasamy, Consultant Neurosurgeon at the RHCYP who led the introduction of the technique to NHS Scotland, said: “For some patients, by replacing invasive neurosurgery with cutting-edge laser therapy, we not only dramatically reduce risks to these patients, but significantly reduce their recovery time too. 

“The laser surgery is a fantastic development for specific patients and will give some with epilepsy a real chance to live a normal life. The surgery has been life-changing not just for the Angus, but for the entire family. These experiences are what drive me. My patients motivate and inspire me to provide the highest level of neurosurgical care possible to change young people’s lives.”

Following a request from the National Epilepsy Surgery Service to ECHC, the charity identified the Welch Trust, founded by entrepreneur Mike Welch OBE and Victoria Welch, as the ideal partner to bring the LITT technology to Scotland. Children will now come to the capital from all over Scotland to have the surgery. 

Victoria Welch, Trustee of The Welch Trust and a former paediatric nurse, said, “We are so happy to hear about Angus’ successful procedure and so proud that the LITT technology we helped bring to the RHCYP is already changing lives.

“This is a heart-warming piece of news just in time for the holidays, and is also an important milestone in the Welch Trust’s commitment to advancing medical care for very sick or terminally ill children. We remain fully focused on funding high-impact programmes that support children’s critical care and look forward to continuing our partnership with ECHC.” 

Roslyn Neely, CEO of Edinburgh Children’s Hospital Charity, said: “We are encouraged by the life-changing impact that the laser surgery has had for Angus, and his whole family. What an incredible difference this will make to his future, and that of others living with epilepsy who can now go on to have the surgery. We are proud and privileged as a charity to have played our part in this and thank the Welch Trust for their vision and support.”