Thank you for visiting my fundraising page! Please stick with me, as this is quite a long one to go through.

In May this year, my daughter Lois was diagnosed with a rare form of epilepsy known as Infantile Spasms.

Lois has always been a little different since she was born. I can’t tell you exactly why but we just knew there was more to her.

Lois was attending nursery when her key worker spotted something that she described as a “tic” where her arms and legs would stiffen out and her head would drop forward. We then began to notice this become more and more frequent at home, around the time when she was either approaching sleep or shortly after waking up. She would do this in clusters of around 5-8 at a time. Although she never appeared to be in any distress, this was obviously extremely distressing to watch her go through.

My wife took her to A and E after a particularly bad night but was dismissed pretty quickly. Luckily, we had an appointment at a different hospital and the Dr almost immediately spotted what he believed to be Infantile Spasms. He referred Lois to Young Epilepsy for an EEG at their facility in Lingfield the following day. The EEG showed that Lois was experiencing uncontrollable chaotic brain activity, which was causing the seizures. Off the back of this EEG, they were also able to confirm the diagnosis of Infantile Spasms.

We received a call that same evening to say that Lois had to go to hospital immediately to begin treatment. She would remain in hospital until the seizures were held at bay for 24 hours, which came 5 days later.

We were due to go on our first family holiday as a 4 at the beginning of June, where we would be celebrating Lois’ 1st birthday but were forced to cancel, as her medication left her immunocompromised and therefore flying was a no go.

Instead of getting her first experience of a sunny Spanish beach, Lois went through her 1st birthday without smiling or having any interest in interaction due to side effects of her medication, which was particularly hard to take.

The last few months have been a whirlwind of appointments, medication, tests, scans, results, side effects, sleepless nights, worry, panic, uncertainty, anxiety, pain and anger and we are still only at the start of our journey as a family affected by Infantile Spasms.

Lois is very likely going to have physical and mental hurdles because of the affect that the seizures have had on her brain. We’ve had to have some heartbreaking conversations over the past few months and we are now having to accept that she may never speak her first word or take her first steps.

Lois has made really good developmental progress since the medication began and can now sit unaided and even managed to roll over for the first time recently! We don’t know exactly what the future holds for her at this point but what we do know is that we will shower her with love every single day that we have with her.

I wanted to raise money to support Young Epilepsy because of the part that they have played in Lois’ and our story. They have provided Lois with 3 EEG’s to date and each time that we have been to Lingfield has been an experience that their staff have endeavoured to make as pleasant as can possibly be.

Thanks so much for reading. Here’s to our beautiful little Lo Lo and here’s to you and your generosity.

Rob ❤️

If you'd like to join me in the challenge then you can sign up here: https://youngepilepsy.beaconforms.com/form/7ad50ea1

Epilepsy can be one of the most frightening and isolating conditions children can experience. Help show them that we're on their team.Show your support and help create a future where young people with epilepsy are heard, and they get the support they need, when they need it, no matter what.