Calla-Rose lives at home with her parents, Nicki and Lee, and her siblings Alfie and Lilly-May. She had her first seizure at 8 weeks old.
Dad, Lee, shares more about the impact of Calla-Rose's diagnosis in the short film clip below.
Mum, Nicki, expands on Calla-Rose's story.
Calla was just 8 weeks old when she had her first seizure – we got her out of the bath and she was shivering uncontrollably. The next day, she became unwell and was admitted to our local hospital, where she was diagnosed with bronchiolitis. When a nurse came to do her observations, Calla began to shake uncontrollably again. The nurse asked whether this had happened before and after explaining it had happened the night before, the emergency alarm button was pressed and all of the doctors and consultants came running into the room. After several tests and EEG’s, we were told Calla had febrile convulsions.
From then on, Calla’s seizures continued and she was diagnosed with epilepsy. All her EEGs and MRIs came back clear. At 5 months old, she had a tonic clonic seizure lasting 1 hour 30 minutes and was put into her first induced coma.
After being referred to a specialist at Birmingham Children’s Hospital, Calla’s bloods were sent for genetic testing. The specialist didn’t tell us what she was being tested for but the blood test form we were given said ‘SCN1A’. We were left to Google it. One week before Calla’s birthday we got confirmation in black and white that she had tested positive for Dravet Syndrome.
As a family we found trying to cope with Dravet Syndrome in Calla’s early years very daunting. We were in and out of hospital every few weeks. Many times, her two siblings would wake up and find Calla had been taken to hospital, which caused anxiety for them both.
At age 1, Calla was hitting ‘normal’ milestones as expected. She was able to wave, shake her head for no and say ‘ta’ for thank you. It was at this age that development began to slow down, milestones weren’t reached and after every seizure, something she had previously learnt was wiped away and she had to re-learn how to do something. As she has got older, skills have not returned after seizures.
Calla could only crawl until the age of 6 and we were advised she would never walk. To our delight, she began taking steps during lockdown. We always give Calla the best opportunity to make the impossible, possible!
Support from Dravet Syndrome UK
To this day, no consultant has ever sat us down and talked specifically about Dravet Syndrome, SUDEP or any comorbidities. If it wasn’t for DSUK we wouldn’t have had any support in learning about Calla’s condition including what to look out for as she grows and develops.
We have attended the Annual Family Weekend Away and the DSUK Conferences. We’ve met friends at these events who we speak to on the DSUK Parent/Carer forum - putting a face to a name is a special and emotional moment. Without DSUK we wouldn’t have had the support network from fellow parents, who are the only ones who just get you and truly understand what life with a child or adult with Dravet Syndrome is like.
To the future
The pain, suffering, loneliness and never-ending feeling felt insurmountable when we were newly diagnosed, but over time we have all adjusted and adapted. There are still times when it is difficult, but we aren’t overwhelmed - we have plans in place and we are well supported.
Calla's journey with Dravet Syndrome has been challenging but also full of hope and resilience. We've learned to celebrate every achievement and to adjust our goals accordingly. With the support of DSUK and other families, we're confident that we can continue to navigate this journey and provide the best possible life for Calla.
A beautiful, smiley little girl
Calla has an amazing personality with a beautiful smile to go with it. We love her happy hands and happy legs (this is when Calla is stimming –an autistic trait). She loves being outside and being nosey! Her love of water means she enjoys spending time in the bath and hot tub. She loves watching Ben & Holly’s Little Kingdom and playing with her special rattles.