Click here to support Leanne Lyons surgery by Leanne Lyon
Leanne Lyon was born with a rare brain tumour called a Hypothalamic Hamartoma, but back then it wasn't known of. She would never sleep as a baby and as a little girl she would stare and laugh (Gelastic seizures).
She had tests i.e. MRI & EEG at 3y.o but the results looked ok... until she had a sleep EEG!. That was when they could tell there was a problem and by the age of four, when they started her on Epilepsy Medication.
She was actually Diagnosed with Epilepsy age 16, and two years later in 1991 (age 18), Leanne under went a Left Temple Lobectomy to prevent recurring seizures.... unfortunately to no success. Followed by a Vagus Nerve Stimulator (Pace Maker) a few months later, which was removed due to no help.
It wasn't until she was 29 that she was diagnosed with a very rare Brain Tumour called Hypothalamic Hamartoma.
Although this is Benign, the older she's getting the worse the seizure's are becoming.
Plus we have only just found out she has Pharmaco-Resistant Epilepsy, which means any Medication will not work.... Apparently!
Last year (2013) Leanne had some up to date tests (MRI and Video Telemetry egg) at the John Radcliffe Hospital, Oxford (below). Only to find out that she was having a seizure every 5-6 minutes in her sleep.
But, after doing some research on treatments and contacting several hospitals in the USA, Leanne discovered there IS a procedure called Visualase Laser Ablation (keyhole surgery) that they are doing, where they ablate (burn) the tumour of which seems to stop the seizures. So we sent her MRI Discs over to the USA.
Fantastic news came that her HH is only 6x6mm and that she's a good candidate.... Until we was given the amount to raise which was £95,000+ 😢.
Then in August 2016 she had a couple of interviews, due to her story going out on a T.V. show in Japan called Astonishing News, of which it did on 21st September 16.
Due to the programme, she is now in touch with a HH Centre in Japan in hope of Stereotactic Radiofrequency Thermocoagulation (SRT), for a lot less.
This condition is very embarrassing for her and hard for her family to live with. It has ruined her marriage, and she has to live with carer's in and out every day.
In February 2014 Leanne went back to Oxford for her results of her tests the year before, only to be told there is definitely nothing they can do here in the UK, as they don't know enough about the Hypothalamus. She's even been in touch with the University of Freiburg in Germany, who told us it's only done in the USA.
Nearly every 1 in 200,000 people can get this type of tumour (Hypothalamic Hamartoma), and most are in America where they are doing this procedure so they are half way insured.
Message from Leanne "I have two young children aged 9 and 6 who are more like carer’s to me, and I want to see them, and myself living a normal life.....without carer’s and to be able to go out to work!. This would mean the world for me to be seizure free and without my children awaiting for the next seizure to occur.
I am in desperate need of help for this to go ahead as soon as possible, whilst they are still young". My one and only dream in life is to be Seizure free. That's all I ask for in life. Please help!.
The procedure is around £4,500 but we really aim for £10,000 due to flights insurance etc...
Please if you could find it in your hearts to donate whatever you can spare, I know she's an Adult but this would mean the world to her and her children.
It would be much appreciated by Leanne and her family.
Also feel free to share so we can reach a wider range and get Leanne the help she so desperately needs.
Please read information below on Hypothalamic Hamartoma, including a seizure above of Leanne’s son Kieran recorded of her, without her knowing had even happened.