At the age of 4 months old, our little boy Rupert was diagnosed with Infantile Spasms, a form of epilepsy that can have severe impacts on a child’s development and outlook in life. Approximately 400 children a year are diagnosed with it and sometimes, unfortunately, it can be misdiagnosed as colic, as we found out. 

Rupert was officially diagnosed with IS on 10th December following an EEG, which the Consultant informed us “it’s going to be an uphill struggle” to get on top of the seizures. At this point, it felt like our hearts had been ripped out, how could this happen to our perfect little boy! 

He started treatment immediately, and to our surprise, after two doses of steroids, his seizures had stopped. At the time of writing this, Rupert has been seizure free for 57 days. 

At present, we are still unsure whether Rupert can see or hear properly. He still cannot hold his head up without our support and he smiles at us in his own time, but we know he is a happy little boy inside. He is running at his own pace with his development and we are taking each day as it comes. We don’t know what the future will hold for him in terms of development, we have been given a very wide spectrum. 

The Oxford Children’s Hospital and the services it provides have been amazing to both Rupert and ourselves. I am not the biggest of runners but I want to give something back to them for everything they have done for us. 

The OX5 RUN has raised over £1million to help children in hospital throughout Oxfordshire. Please help us raise big smiles by clicking the Continue button below and creating your JustGiving page. Creating a page through JustGiving is the easiest way to start fundraising and will ensure that your fundraising efforts are counted.