Amber started having seizures around eighteen months old. Initially she had short Tonic Clonic seizures but over time the seizures became more frequent and longer in length and she was admitted to hospital every few weeks. Amber's consultant referred her to Great Ormond Street Hospital, (GOSH), where she was put on multiple medications. Sadly these medications had no effect, and over the next few months the seizures became even longer. Eventually blood tests were carried out, and we were informed she had Dravet Syndrome.
Amber’s Mum and I searched everything we could about this syndrome and our hearts broke when the seriousness of the diagnosis became clear, and we realised that Dravet Syndrome was life limiting. Over the next few years Amber was put on a range of medications, but nothing seemed to help. She was admitted to hospital nearly every eight to fourteen days so we used to have a hospital bag packed, ready at the end of her bed, as she would stay in hospital for two to three days days to recover from the seizures.
When Amber was four years old she began mainstream school. Very quickly, (and sadly), it became clear that Amber had a learning delay. Unfortunately the school was not supportive. Amber’s Mum and I had to fight to get her the support she needed. During this challenging time, Mum and I looked at special schools all over the South of England. Eventually we found the best little school in the London Borough of Ealing, called Castlebar.
Castlebar School turned out to be exactly what Amber needed, and she was welcomed with open arms. It was great to see her so happy!
Despite the success with schools, Amber seizures were not getting better. At one point Amber had two back to back seizures, which lasted over three hours, and where she went into 'Status Epilepticus'. Amber had to put onto life support on both occasions. After these incidents, the hospital told us that Amber would need to carry an emergency drug called Paraldehyde, with her at all times. This was to be given immediately once a seizure started. Unfortunately although Paraldehyde was supposed to help, it did not have the effect that it should. Moreover, Amber was on so many medications, she would struggle to walk for periods of time; she would loose her balance and fall quite regularly; her hands would shake when trying to eat; and she had a glazed look in her eyes, which was a side effect of all the medications she was on. It was very worrying and upsetting to see the poor quality of life that she had.
For this reason, Amber’s Mum and I, decided to go to different epilepsy workshops to search for something that may help Amber. One day we came across Emma Williams who runs Matthews Friends charity. The meeting with Emma was about to change Ambers life!
Emma, who has a son with Dravet Syndrome, informed us about the Ketogenic-Diet, and the positive effect it can have on some children with epilepsy. We decided then and there that Amber should try it. We informed Amber's GOSH Team that this is the route we had decided to go down; and even though it was met with some resistance; we made it clear, that we had tried all the medications available, and we wanted Amber to try the diet. Amber was seven and half years old.
From that day forward Amber has been seizure free, and there are no words to describe how our little Angel blossomed on the Ketogenic-Diet. Mum and I, can only say, that there are no guarantees that the Ketogenic-Diet will work, but we would recommend that you speak to the team at Matthews Friends. They are amazing and beyond helpful!
In the last four years we have seen Amber really show her true personality. The glaze in her eyes has gone; she no longer falls over when walking; and she doesn’t shake anymore. In fact, Amber is now able to ride a two wheeler bike unassisted. Before she was put on the Ketogenic-Diet she was not able to swim, and now she can do lengths of the pool. She has even signed up to the Special Olympics Team, and will be competing in the next competition!
What is best of all though is that she has a great big smile on her face, and is always dancing and cracking jokes! She is a huge WWE and football fan and finally she can now read, and is also writing which we never thought we would see. In our eyes Amber is our little superstar!
Written in 2020