Rare brain tumour diagnosis

My beautiful baby boy is only 14 month old. He has just recently been diagnosed with an extremely rare type of brain tumour (hypothalamic hamartoma) as well as a rare form of epilepsy called gelastic epilepsy.

The tumour is placed deep inside his brain in a location called the hypothalamus, it’s also pressing on his pituitary gland. (The area of the brain responsible for hormones, emotions etc..) We’ve been told he could go through puberty as early as 5 if left untreated. On top of this his eyesight may start to become effected due to the location. Of course the operation cannot go ahead without the possibility of severe complications.

Operating is risky and complications could cause further cognitive defects.. But what else are we to do when if nothing is done he will just begin to deteriorate slowly. The medication isn’t helping and wasting years of precious childhood trialing different drugs before we get offered something more isn’t really an option. The amount of seizures Lake is having is affecting his development. He can often have up-to 8 seizures a day and they can be very detrimental to the brain which will further defect his cognitive ability in some shape or form.

His seizures began at just 5 weeks old but were not acknowledged as seizures to start, they were thought to be startle reflexes. The seizures didn’t stop and mothers instinct told me there was more to this so we persisted and he got diagnosed with epilepsy at 7 months old.

He then started having giggle seizures around 9 months (which are misdiagnosed all the time due to the nature of the seizures ). I did a lot of my own research and suspected early that a tumour was causing the gelastic epilepsy.

At 14 months he was diagnosed with gelastic epilepsy through an MRI scan. We were told that he did have a tumour.

His condition is so rare only 30,000 people in the world have it. Our aim is to raise the money to have an operation that is known for being less invasive than the highly dangerous standard operation for this type of tumour. The operation comes with a lot less risk and less chance of failure. Estimated 93% effectiveness of completely getting rid of all his seizures. If we cannot have the surgery here we will look abroad and if still no hope then all the money will be donated to the HHUGS.uk charity.

We are on a waiting list and although the NHS are amazing and his team are doing all they can, we just simply don't and cant wait, he isn't developing well and could regress.

We have a long journey ahead of us and this impacts our life daily, watching your child have multiple seizures is heartbreaking and knowing each one can cause damage is something no parent should ever have to worry about.

Thanks so much for taking the time to read this and another thank you to any donation how big or small it may be.

Kennedy, Josh & Baby Lake