Meet Charlie

“Someone once told me that superheroes come in all shapes and sizes… let me introduce you to ours, Charlie."

“Born 5th May 2014, weighing nine lbs and as cute as a button.”

When Charlie was born, parents Anna and Steve were over the moon. For the first nine weeks they felt like any other parents, adjusting to sleepless nights and learning how to care for Charlie. However, after his eight-week jabs, Anna noticed Charlie kept flickering his eyes side to side, so called the GP who told her it was a stigmatism – something that is quite normal.

The following day, Charlie was restless, unsettled and started having some jerking movements, at which point Anna and Steve took him to the local hospital, as something didn’t seem right.

The doctors conducted initial tests, including an EEG and Charlie’s first MRI scan. Then Anna recalls how, “my husband and I were taken into a room and told that our precious little boy had an abnormal malformation on the back of his brain. Doctors believed it was giving off extra electrical currents causing what we were then told were epileptic seizures.”

As the initial test results were quite severe, doctors were unable to tell Anna and Steve what Charlie’s future would hold except that there was a chance he could have considerable brain damage, as the “epilepsy Umbrella” was very unpredictable.

“Within that moment our life as we knew it was shattered into a million pieces.”

“We were being told our precious little boy had been diagnosed with Epilepsy and his future would be so unclear.”

This would be the beginning of Anna, Steve and Charlie’s journey into the world of hospitals. Including lots of appointments, invasive tests and the introduction of medications to try and control Charlie’s seizures.

Over the next six months, Charlie went on to experience anything from 10-17 seizures every day, until his doctors found a combination of medications that allowed Charlie to remain seizure free for around 15 months.

Anna explains, “The only way I can describe that period to you, was like living in a bubble. I couldn’t tell you the date of so many of his milestones like normal mothers could, but I can tell you on what specific date how many seizures he was having and what his medication dosage was.”

However, Charlie eventually broke through his medication and the seizures returned. By this time, Charlie was a toddler and Anna and Steve could tell that his development rate was slower than other children his age. They became worried about what his future would hold.

Every time Charlie had a seizure it would knock him out and he would need a sleep to help him recover. “As he grew, he became more aware of what was going on and this became harder and harder to watch as we were completely helpless”, remembers Anna.

“Every time he had a growth spurt, he would break through his meds meaning they would have to be increased bring them back under control, however this was the same cycle that kept happening over and over again.”

The decision.

At this point, Charlie’s consultant started talking to Anna and Steve about the possibility of Charlie being a suitable candidate for potentially life changing brain surgery.

Over the course of the next year, Charlie underwent a series of more invasive tests and more MRI scans with general anaesthetic. “The pinnacle set of testing was his week of telemetry when our brave little man was hooked up to an EEG machine to monitor his brain activity and look for the exact location of the seizures.”

Anna and Steve recall how Charlie was told he had to stay in the same room for five whole days and was not able to go any further than the two-meter cord would allow him.

However, this all seemed worthwhile when the data was analysed, and Anna and Steve were informed that Charlie was a suitable candidate for surgery.

Charlie’s surgeon was offering to do a TOP disconnection, where they would go into the brain and disconnect part of his temporal, occipital, and partial lobes. This would completely sever a part of the brain and cut off the electrical pathways the doctors believed to be coming from his malformation and causing the seizures.

Steve and Anna were left with the hard decision, “do we go ahead with this very complex surgery that would leave our little boy with no peripheral vision on his left side, as they would sever the optic nerve, and with no guarantee that it would be successful? Or, do we take a chance with new drugs and see what happens?

“After lots of research and talking it through, with doctor, our family and friends and of course each other, we decided that this was the best chance Charlie would have of being seizure free.

“To say it was the longest 9 hours of our lives would be an understatement.”

In November, last year, Charlie underwent a TOP disconnection.

Anna remembers “the amazing surgeon saying they were happy with how the operation went and walking into the recovery room to see our phenomenal little soldier lying there, smiling up at us saying ‘mummy me not do that again’ – we knew we had made the right choice.

“Recovery had its challenges, mainly trying to keep a four-year-old still and not in the park or on his scooter. However, fast forward 10 months and five days to today and I can amazingly say that Charlie is still seizure free, slowly being weaned off his medications, and three days ago started year one with all of his friends.

“Charlie has come so far, and we are so proud of him, although he has lost his left side peripheral vision and has some delayed learning and behavioral difficulties, our little monkey takes everything in his stride!”

“We are Charlie’s voice and we are the ones that have had to fight for him.”

From day one, Anna and Steve made a promise that they would always stay positive and upbeat around Charlie, no negativity was allowed, and it was all about doing the best that they could for him.

“That’s not to say we didn’t have our low days and a few tears shed every now and then, but we are Charlies voice, we are the ones that have had to fight for him, to ensure he has the best possible chance of any kind of new treatments, tests, or procedures out there.

“So, when we were contacted by Sparks and learnt all about the fantastic work they are doing, especially the particular project researching child-friendly brain scans for epilepsy, we knew we had to be part of it.”

Charlie has had a total of six MRI’s over the last five years, all of which have been stressful and unpleasant, with needles and gas masks.

“Having to watch your baby go limp from general anaesthetic and praying he will be okay, is a pretty horrific thing to have to experience as a parent.

“The thought of family friendly process and better images with the advanced 7T MRI technology can be nothing but positive and we are so excited to see what this cutting edge research will bring.

“Early detection and more accurate diagnosis with just a scan could save families, just like ours, years of turmoil, and most importantly the best possible chance for treatment and fewer invasive tests for future generations to come.”

One in three children with a rare condition won’t live to celebrate their fifth birthday. With your help, we can fund research into life-changing treatments that will help children in the UK like Charlie, who have rare and complex conditions.

Anna and Steve want to thank you for reading Charlie’s story of his epilepsy journey and thought it was only fitting to let their little superhero himself have the last words…