Changing lives thanks to generous donation

Hypothalamic hamartoma (HH) is a type of rare, benign brain tumour arising from the hypothalamus deep in the brain. It is responsible for many ‘automatic’ brain functions such as controlling hunger, thirst, emotions and regulating hormones. These often-small tumours can cause seizures that present as laughing (gelastic) seizures or crying (dacrystic) seizures.

This type of epilepsy is a form of focal epilepsy, which means the seizures are arising from a specific part of the brain. Some patients respond very well to drugs, but for many others, surgery provides the only chance of reasonable seizure control.

Surgery for HH epilepsy is very complex as the tumours are located deep in the brain. Laser ablation is a technique designed to destroy abnormal brain tissue in an extremely targeted manner, while causing minimal damage to surrounding healthy tissues. Using a state-of-art laser, surgeons can directly target the lesion in a minimally invasive way whilst protecting vital structures around the lesion.

Because the surgery is minimally invasive, patients recover from the operation much quicker. They normally spend 2-4 days in hospital, as opposed to 10-14 days for traditional open neurosurgical techniques.

So far, 32 patients at GOSH have had surgery using this technique. This is thanks to a generous donation from The Gerald and Gail Ronson Family Foundation to GOSH Charity.

Nicole Ronson Allalouf, Trustee of The Gerald and Gail Ronson Family Foundation, says of the donation:

“Our Foundation decided to purchase Laser Ablation equipment for GOSH in 2018 in order that the latest effective treatments could be available to patients in Europe. Our daughter was treated in Texas Children’s Hospital in the USA over six years ago, as they were the only hospital at the time who were specialising in ablating deep brain tumours with this new technology.

“We were fortunate enough to be able to travel abroad in order to receive the best treatment available for our daughter, but we felt that it was imperative (and our duty) that we help children in this country to be able to receive the best treatment possible (and hopefully the best outcome) on the NHS.

“We are absolutely delighted with the ground-breaking new laser ablation technology and hope that this new treatment method will continue to help both adults and children in their treatment for brain tumours and epilepsy.”

GOSH is the only centre in the UK currently offering this type of surgery for control of epilepsy in either children or adults. 

In October 2022, NHS England announced that they would be commissioning a national service to widen access to this surgery for children and adults across the UK with difficult to treat forms of focal epilepsy.

Mr Martin Tisdall, Consultant Paediatric Neurosurgeon at GOSH, and his team are “very pleased” with the outcomes of the laser ablation service so far.

“...The majority of our patients have seen vast improvements in their seizure activity which allows them and their families to live more normal lives,” he says.

“GOSH is uniquely placed to take innovations in surgery like this and scale them up thanks our large patient cohorts, expert subspecialised clinicians and our multi-disciplinary teams.

“We are really grateful to GOSH Charity and its donors including The Gerald and Gail Ronson Family Foundation for helping us to establish this novel therapy.

“We strongly welcome the commitment from NHSE to create specialist centres for this treatment in the UK and we look forward to working with our partners to share our expertise and allow more people across the UK to access this life changing surgery.”

Five-year-old Ellie from Royal Wootton Bassett is one of the children who has benefited from this surgery.

She had a hypothalamic hamartoma treated with laser ablation in May 2022.

Before surgery she was having up to 50 seizures a day.

Below, Ellie’s mum, Lynnette, explains the difference this surgery has made to their lives.

“Ellie had been having short episodes of laughing and crying since she was about 6 months old, but at the time we thought they were just her expressing her emotions. It wasn’t until she was three when we realised something was wrong. We were having breakfast and she laughed, seemingly out of nowhere, so I asked her what had tickled her. But she said she felt unwell and sad after laughing which was strange. I looked into this online and as soon as I read about HH and discussed it with my husband it just clicked to us that that was what she had.

“Ellie was having at least ten seizures a day and up to ten through the night, but at times this was as high as 50 and Ellie had to be hospitalised. The seizures were having a huge impact on her life as they left her exhausted and disoriented. We used to have to plan to do things with her in the morning only, as we knew by lunchtime she would be so tired from the seizures.

“Immediately after the surgery the difference was clear – and she hasn’t had a seizure since. We tried very hard in those early days to not get our hopes up too much, as the team warned us anaesthetic can suppress seizures and that the surgery may only reduce and not completely stop the seizures. We were hopeful, but always touching wood!

“Six months after surgery our lives are so different. Ellie has just started school and it’s so wonderful to see her enjoying it. We were always watching her for signs of seizures because if they were different, we had to call an ambulance. We can now relax a lot more and she can now do all the normal things that children her age do without being interrupted by seizures or being exhausted. She loves swimming and playing with her little brother and her friends and has so much more confidence.”