FRANK'S STORY

When we found out we were expecting our first child we couldn’t have been more excited. It was to be the first baby in the family and everyone was over the moon. The pregnancy went well and on 9th August 2014 our beautiful baby boy was born. We lived in our happy perfect little bubble for 4 months and 2 weeks, until our worlds changed forever.

 

After a lovely day visiting friends a few days before Franks first Christmas, we came home and gave him a bath. When we got him out and laid him on the changing table we knew something wasn’t right. He first went limp and then the left side of his body began shaking rhythmically. We knew he was having a seizure and called for an ambulance. The seizure failed to terminate by itself so the paramedics gave him rescue medications and we were transported to the local resus unit. For some reason after a few days in hospital and him making what appeared to be a full recovery we felt like everything was ok and put it down to a febrile convulsion which can be quite common for children. This was until the same thing happened a few weeks later, and then again and again and again. It seems crazy now but when the paediatrician told us Frank could have epilepsy the first thing I thought was ‘he may never be able to drive’, now looking back I know that would be the least of his problems.

 

By 9 months old, after tests at Great Ormond Street Hospital, we were told Frank had Dravet Syndrome. A catastrophic form of life limiting epilepsy. The neurologist tried to explain to us all about his condition but after he uttered the words ‘life expectancy’ everything became a blur. We were told that Frank has around a 80% chance of surviving until later childhood and that his development would begin to deteriorate as well as many other things such as speech and mobility. Frank has fought some incredibly tough battles in his 6 years on this planet, including 2 stays in intensive care on life support, one of which we weren’t sure he would pull through. He has had over a hundred seizures and his life is affected daily by his condition because of everything surrounding it, such as a heart condition, adhd, autistic traits, sensory processing disorder, feeding problems, a low immune system and many other things.

 

Dispite everything Frank goes through he is continuing to prove all the medical professionals wrong and is thriving in everything he does. He is currently in a mainstream school with 1:1 support, has a wonderful relationship with his 2 sisters and has made many friends and even a best friend. When you are told at 9 months old that your child may never walk or talk , every milestone feels like a miracle. Frank is our miracle, every single day. He has taught us to be so grateful for what we have and he really does make the world a better place with his beautiful nature and cheeky personality.

Written in 2020