A nine-year-old boy has put together an adorable child-friendly ‘what to do in an emergency guide’ for his five-year-old sister who suffers from epilepsy.
Theodor Smallwood created the guide after his sister was diagnosed as a way for him to deliver the emergency care she needed — and to help other young people who find themselves in a similar situation.
Theodor’s sister Eléonor had her first seizure at just fifteen-months-old during the Covid lockdown in October 2020, which caused her to stop breathing and turn blue.
The family, from Liverpool, quickly phone an ambulance and Eléonor was rushed to hospital, but unfortunately the convulsions continued.
Theodor, who was just age five at the time, witnessed the seizure and the whole family said it was ‘traumatising’.
When asked about Theodor’s emergency guide, his mother Danielle said: ‘Theodor has witnessed several of his sister’s seizures and it was quite scary for him, so going through the steps helped him understand how to act in an emergency.
‘Theodor brought it into school to show his teacher and friends. He also has a copy at home.
‘Eléonor had a seizure after he wrote the guide and Theodor and Beatrice were an amazing help.
Theodor Smallwood, nine, created the guide after his sister Eléonor, five, was diagnosed as a way for him to deliver the emergency care she needed
Pictured: Theodor with his youngest sister Eléonor (pictured centre) and his other sister Beatrice (right)
Pictured: Theodor’s hand-written guide of ‘what to do in an emergency’ to help someone having a seizure
‘They were so calm and helped the emergency services gain access while I assisted Eléonor.
‘They knew she had to be put in the recovery position and they also helped me pack a bag to go the hospital with her.’
Theodor’s ‘what to do in an emergency’ guide reads:
- If the seizure lasts longer than five minutes you need to call an ambulance
- 999 is the emergency number
- Check around the person that there is no danger
- Tell the operator where you are and tell them information about the seizure
- Take deep breaths and stay calm
- Look out for the ambulance and signal where you are
- Tell the paramedic everything you know about the seizure
- It can be a little scary but you learn how to deal with them
It wasn’t until July 2022 that Eléonor was diagnosed with focal onset with secondary generalised epilepsy — a type of seizure that starts in one area of the brain and spreads, causing a loss of consciousness, jerking and breathing difficulties.
Danielle said an actor from one of Theodor’s favourite films, The Descendants, passed away due to an epileptic seizure.
Cameron Boyce, 20, died in his sleep in July 2019. His official cause of death was Sudden Unexplained Death in Epilepsy (SUDEP).
Theodor’s mother Danielle said he and Eléonor have a really close bond
Theodor and Beatrice watch YouTube first aid for seizures and often recite to each other what to do in an emergency should their sister Eléonor (pictured centre as a baby) need help
Pictured: L-R: Darren Smallwood, Beatrice Smallwood, Eléonor Smallwood, Theodor Smallwood and Danielle Smallwood
‘It wasn’t something we wanted to tell him but he heard through a friend he had passed away and he asked me was it epilepsy like he had been told,’ Danielle added.
‘We were honest with him but reassured him that all we do every day to prevent seizures and having his guide and knowing what to do in the event of a seizure helps her so much.
‘Theodor and his sister also watch YouTube first aid for seizures and often recite to each other what to do.
‘They know she needs to be careful doing certain activities and will always be there to help monitor her.
‘They have also said they will drive her around when she is older if her epilepsy prevents her from having a driving licence.’
Theodor took on a 10,000 step-a-day challenge in October to raise money for Young Epilepsy.
The organisation works to support young people with epilepsy by supporting education, conducting research and deliver health services and assessments.
Speaking on the JustGiving page, Theodor’s father Darren said: ‘We are so proud of Theodor for completing this challenge, all pictures of his Fitbit were posted on Instagram throughout the challenge.
‘He hit is target which is absolutely amazing and thank you so much to everyone who has sponsored him and supported and encouraged him throughout.
‘We decided to leave the sponsorship open a bit longer incase anyone else wanted to sponsor him. £1000 donations for Young Epilepsy go towards genetics testing.’
To make a donation, visit justgiving.com.
