Our September warrior Callum – starting school after an IS diagnosis

Our rainbow baby boy Callum was born two weeks late in the middle of August 2018. I had a fairly
easy-going pregnancy until our 20-week scan when we were told Callum had some extra fluid in the
right ventricle of his brain, but it was nothing to worry about. I continued to have monthly check-
ups, but the fluid never increased in size and never once gave us real reason for concern. The day
after Callum was born, an ultrasound was undertaken on his head, and we were informed by the
doctors that the extra fluid in his brain had naturally drained away. I remember breaking down with
happy tears knowing our little boy was healthy, and we were free to go home and enjoy our new-
born bubble.
Unfortunately, all was not as well as it seemed. As Callum grew, he started to miss his milestones
and I knew deep down something was not right. At around nine months old Callum was diagnosed
with Global Development Delay, and we awaited an appointment with our community paediatrician
to start the process of investigating the underlying cause. A week before the appointment we were
on holiday and Callum started to make these strange eye and arm movements. This was the first
time my husband and I had noticed these, we just thought it was very unusual but thought maybe he
was overwhelmed with all that was going on around him. We decided to keep an eye on him but a
few hours later we noticed the spasms, which had been very mild, started to become increasingly
regular. The next day we cut our holiday short, drove home and took Callum straight to A&E. A few
days later he was diagnosed with Infantile Spasms, five days before his first birthday. We were
incredibly lucky Callum was diagnosed so soon after the onset of his first spasm – video evidence
certainly helped this.
Callum was prescribed prednisolone and vigabatrin and I remember feeling relieved we had a
diagnosis, we were over the worse of it, we had this under control and Callum would now start to
catch-up with his peers. Sadly, we only had control over the spasms for a few months and overtime
Callum’s condition has become more complex. He was diagnosed with refractory epilepsy and then
in early 2021, Callum was further diagnosed with Lennox-Gastaut Syndrome. We have a fantastic
team of specialists involved in Callum’s care including the wonderful teams at Hinchingbrooke and
Addenbrookes Hospital who were very quick at initially diagnosing Infantile Spasms.
As Callum prepares to start school in September, I cannot help but look back and see how far he has
come since those very early days sitting in Addenbrookes hospital scared and not knowing how to
deal with what was coming our way. Callum faces daily challenges; he is unable to sit unaided for
lengthy periods of time and cannot communicate fully but we see improvements in him every day.
He has been through so much for someone so young, but he always does so with a little smile on his
The special school Callum will attend has an Ofsted rating of Outstanding and I have to say the
school is just that. Callum will be provided with a curriculum focusing on his cognitive development
and physical needs to help him reach his full potential in all aspects of his life. He will be in a class of
eight children and approximately six members of staff who are fully trained in all aspects of Callum’s
care, with full knowledge of what to do if he has a seizure. They truly are wonderful and have put my
mind at ease about everything. There have been many documents to complete, forms to fill in and
sign and meetings to attend. It was very overwhelming at first, but it has certainly been worth it.
I am sad that Callum won’t be able to tell me about his day at school, the friends he has made or
what he ate at lunchtime, but I know Callum will be receiving the best care possible and ultimately
as a parent we all want to know our children are safe and happy at school and that’s all that matters.

I made my peace with the fact Callum would need to attend a Special School soon after his diagnosis
and I am pleased I faced this reality very early on. I will be completely honest, it can be very hard
seeing children of the same age as Callum, attending the nursey at our local school, playing, and
making friends but I have accepted Callum is on his own journey and if he was meant to attend a
mainstream school then he wouldn’t be our little warrior.
I am very excited for the next chapter in Callum’s story.