Andrea, Gary, Alex, Kieran & Olivia
Olivia was born in November, 2007 and it quite quickly became obvious to us that something wasn’t right. She was continually distressed, nothing could console her and she was waking repeatedly during the night and having seizures (little did we know at the time that’s what they were); she would jerk her arms and legs in clusters of spasms that lasted around 15 minutes each time - each one damaging her little brain. After many visits to the doctor, and incorrect diagnoses, ranging from colic to an ear infection, we decided not to wait any longer and took her to our local A&E department. After a series of tests our beautiful baby girl was diagnosed with Infantile Spasms (west syndrome). She was 4 months old. Initially they could not find a cause for the spasms, however when she reached the age of one they performed an MRI Scan where they discovered that Olivia was born with a brain abnormality. She was diagnosed with Closed Lip Schizencephaly, an uncommon congenital disorder of cerebral cortical development. She was initially started on Prednisolone but this had no effect, then soon after she was placed on a course of steroid injections which halted the seizures for six weeks, however, they returned soon after the course was completed. This was a terrible time for Olivia as her weight ballooned and she became a very very unhappy little girl. It was heartbreaking.
Over the last 10 years, Olivia has tried many different AEDs, and none have been successful; we even spent a year on the ketogenic diet, desperately weighing and measuring all her carbs, proteins and fats in the hope that this would help, sadly it did not. Olivia is currently taking a cocktail of drugs and the side effects of these are just as debilitating as the seizures. Olivia is tired throughout the day, she sleeps at school regularly and cannot spend a full day out of the house without having to have a sleep. Her behaviour can be extremely challenging, and it is very hard on her two older brothers who have had to put up with more than most.
Olivia has suffered every day of her 10 years with seizures every night. Her brothers have spent the last ten years condemned to silence in the fear that speaking too loudly would wake her and trigger a seizure. No fun for two young lads who just want to do normal teenage things. We thought we were lucky, that as bad as the seizures were, she was having them in a safe place in bed at night with us constantly at her side. However, the last two years have proven to be even harder for her as she began to suffer Atonic Seizures (drop attacks). These are extremely frightening for her and all of the family as she will drop to the floor, usually face first and has suffered many injuries because of this. She now wears a protective helmet at all times during the day. These seizures can be triggered by unexpected or loud noises such as a sneeze or dog barking. It is near impossible to stop her falling due to the speed of the drop, and we are now waiting for a wheelchair to be custom made to enable us to take her out so that she is not at risk of injury and we can concentrate on our whole family and do normal family things. As well as suffering from other seizure types (absence and focal), Olivia is globally developmentally delayed and because of this she is unable to understand her condition and express her thoughts and feelings. It is emotionally and physically draining, and she will continue to need adult support and guidance throughout her life.
After reading about medicinal cannabis and the success that other children throughout the world have had, we are desperate for our little girl to be given the same opportunity as she deserves the same chances as other children. We have discussed the possibility of CBD with Olivia’s consultants, however, with it being such a contentious subject, we haven’t made the progress we had hoped for. As a result of this, we have had to research most of the information ourselves; receiving no support from Olivia’s hospital. At this current point in time, we are unable to travel abroad for treatment as we would not be able to fund the expense. Her future is uncertain, and as her family, we want to give her the best chance, yet we are frustrated that we are being refused access to potentially life-changing medication for our daughter.
The law now needs to be changed to enable every child with a serious health condition access to medicinal cannabis, and it is equally important that the NHS receives the correct training and guidance so that it is able to safely deliver the correct information in order to successfully support its patients.