Our 4 year old son, Emerson has been diagnosed an epileptic with gelastic seizures. This is a very rare type of seizure in the form of laughing. We are searching for specialists, answers and contributions towards getting our boy to the USA for treatment.

Gelastic Epilepsy is a very rare type of epilepsy and the seizures are in the from of laughing or crying. The most common areas of the brain, which give rise to gelastic seizures, are the hypothalamus (a small and extremely important structure deep in the center of the brain), the temporal lobes and the frontal lobes. A common cause of gelastic epilepsy is a small tumor in the hypothalamus. This tumor may be either a hamartoma or an astrocytoma. A hamartoma tumor is the most common cause of this type of rare seizure but Emerson’s MRI scan was clear, so this makes his case even rarer, more unique and harder to understand.

If not treated correctly the seizure’s may develop and increase to worse seizures that can cause learning and behavior disabilities. As this seizure type is so rare we do not know if they are currently causing damage as there is very little research. Currently the UK can not give us hardly any information on these seizures so we are searching the world for some one who can. We want to give Emerson the chance to know and give him viable treatment options that he deserves.

Every time we hear our child laugh our hearts sinks. A child’s laughter is meant to be the most beautiful noise as a parent and every day is a struggle for us. We are seeing his seizures increase in front of us and there is nothing we can do. Since I have found out about Emerson’s diagnosis I have been searching the UK for a specialist and rare types of epilepsy in this area. In the private sector and NHS and I have had no luck. After reading many case studies about Gelastic seizures and medical reports as well as research trials we can only find a handful of cases world wide similar to Emerson that we know of so far. However none of these are in the UK either. That’s why we are turning internationally we are trying to do whatever we can for our son. To be able to say we tried everything we possibly could.

Why have we set up a page?

Asking for money was extremely hard for us to do. We are putting our wedding fund, loans, savings and inheritance from the family towards this. We are putting everything we can but unfortunately it still wont be enough. £25,000 is the minimum that we are going to need. Just a consoltaion alone can be anything from $58 8 - $700.

There is a Children Epilepsy specialist center in the USA, that specializes in gelastic and rare epilepsies. They have already been sent and seen his test results so far and they have accepted him as a patient and the plan is to go out to them as soon as possible . This is why we are asking for your support. Not only do the USA have the specialist neurologist’s in this area, they also have the facility’s. There is a scan called Magnetoencephalography, (MEG scan) which is an imaging technique that identifies brain activity and measures small magnetic fields produced in the brain. A MEG scan is not available in the UK for children. This type of scan is used to help define where the seizures are originating from and can provide the best course of action regarding treatment in rare epilepsy’s.

What are we asking for?

A neurologist that specializes gelastic seizures -

We are currently looking at going to an epilepsy specialist center in San Francisco, however if anybody knows anybody that specializes in this type of seizure it would great to hear from you. Or if anybody knows any cases of gelastic seizures without a tumor or any learning disabilities, I would really appreciate hearing from you.

Flights –

From anywhere in the UK to San Francisco. It will be for 2` adults and one child. If anybody has any support from an airline company’s anything at all would be really appricated. We are hoping to go in April / May

2018. Accommodation -

We are looking at going to San Francisco. At this stage we do not know how long for but anybody knows anybody that can help support us with accommodation again would be deeply appriacted.

Contribution towards medical treatment -

First Stage-

For the first stage we would go see a specialist have an MRI and MEG and then have a follow up consultation to say he wont need any further treatments and we would be out there a maximum of 2-3 weeks. The cost for this could vary from $13,676 (£10,398) to $28,440 (£21,624).

Second stage- The worst case scenarios is that they find something in the scan that would lead to a PET scan and surgery which could result in a substantial amount of money and time needed to be there. We obviously hope this doesn’t happen and we never get to this stage. The cost for this could vary from $87,676 (£66,664) to $134,440 (£102,220).

Even though we have been given a horrible situation I also feel lucky. We are lucky to be currently at stage 1 and still very premature and we have been given the opportunity to potentially prevent damage which I know a lot of other people may not of had. Please read below Emerson’s story. If you would like any more information please do let us know.

Emerson's storey

Our son Emerson is a happy smart little boy who loves being outside. He’s cheeky and extremely boisterous yet so kind and gentle, with the biggest heart. If you looked at him now you would think he was a normal 4 year old boy, learning to ride his bike with the world at his feet. Earlier this year we noticed Emerson started laughing in his sleep. His dad Ben and I thought this was really cute as it sounded like he was having a lovely dream. We then started to notice it was happening more often, Ben and I would just smile as we felt like our boy was happy and content. One day after a long day at nursery he decided to have a nap on the sofa. I was next to him and he then began to laugh. I looked over and his eyes where open but glazed over. I thought he was sleeping with his eyes open (as I’m sure I’ve done this before!) so I decided to film him. As again I thought it was kind of cute! The next morning I showed my friends and family this video of our content, happy, little dreamer. I then received a call from my Auntie who is a GP. She said that she saw the video and believed he might be having a gelastic seizure and he needs to be seen by a doctor straight away. I was obviously in shock as I thought a seizure was when people drop to the floor and convulse etc. I would of never of thought something so beautiful such as laughing could be dangerous in any way!

This was the day our life turned upside down.

After an EEG, MRI scan, and a 48 hour home telemetry EEG we was told Emerson’s laughing episodes were in fact a very rare type of seizure, called gelastic seizures/epilepsy. Emerson’s seziures are increasing and they are not controlled. The neurologists have told us they do not know if this is causing him any damage or what it could mean for Emerson’s future. Well that’s why I’m here asking, we need to know what these seizures are doing to our boy and what this could mean for him.

So please, to all of our friends, our family and strangers reading this, please help us get Emerson to the USA. We know it is annoying to get your card out but anything at all would be deeply appreciated. We hope you know that we would never dream of asking unless we had to. This would honestly be life changing for our family. Even a share would be enough. All we want more in all of the world is to hear our son laugh without having the feeling of fear and to be able to give Emerson a normal, happy life. Ben, Emerson and I would welcome any support at all that you can give to us.

Thank you for taking time to read this.