At the age of three Christian was a confident, perfectly happy and healthy little boy who was hitting all his milestones and doing very well in preschool. Following a chest infection and with no warning signs at all, Christian started suffering from seizures. He was admitted to the intensive care unit twice in one month, which was a very traumatizing experience for Christian. At the height of his seizure activity Christian was suffering 50 – 60 seizures a day, which the doctors struggled to control and there was, unfortunately, some permanent damage caused.
After many tests and months of being in and out of hospital, Christian was diagnosed with Doose Syndrome, which is a rare form of Epilepsy. Christian is also diagnosed with ADHD, Autistic Traits, a diminished IQ and behavioural problems. He suffers from several kinds of seizures, some of which are Generalised Tonic-clonic seizures, Atonic Seizures, Absence Seizures and Myclonic Seizures. He currently takes 20 tablets a day in an attempt to keep the seizure activity under control, but the medication, in turn, causes many side-effects and, as yet, has not managed to prevent all seizure activity.
Because of the Autism diagnosis, Christian struggles with food aversion and getting him to eat is a constant struggle and he currently weighs in at just 30kg’s. Christian attends a special needs school which specialises in children with Autism.
Christian and his family are fortunate to have been invited to participate in a genetic study in association with Boston Children’s Hospital and Harvard Medical School. The genetic testing would pinpoint the possible causes of Christian’s medical challenges and should lead to his treatment going forward and hopefully improve his quality of life as he gets older which is something that any parent would want for their child. While they are in the States Christian will also undergo a drug trial for three months in an attempt to try and lower the volume of drugs he is currently taking. Christian will also benefit from attending school while in the USA, which will be an amazing experience for him.
“This journey has taught us to never give up hope and although each one brings with it its own challenges, we are thankful for each day.”