Lucia’s Story
Lucia was born on NYE 2013 after a normal delivery and the midwife said ‘she’s perfect’, turned out she was wrong..
On the 31st of Oct 2014 when she was exactly 10 months old I found her in her cot having her first seizure I called an ambulance she was still seizing when we got to the hospital and continued to seize for 40 mins. We have no idea how long she was seizing before I found her we were told it was febrile won’t happen again and we went home. Two days later we were back, a 35 min seizure, still told it’s febrile! One month later she had a huge seizure that didn’t stop with any intervention, she was intubated and sent to Temple St hospital in Dublin and spent days in the PICU. They took blood for genetic tests/lumbar punctures/EEGs/MRIs. She wasn’t even 1 year old.
We waited, meanwhile the seizures continued, and we found out we were expecting another baby in March 2015.
In May 2015 5 months after the genetic tests I got a phone call; she has SCN1A gene mutation and was told don’t google it! I hung up and googled the shit out of it. I read for the first time DRAVET SYNDROME, I was at work and I had to leave work, I was completely devastated by what I read – tonic clonic seizures, absences, drops, focals, I had never even heard of all these things, development delay, cognitive issues, non-verbal, unsteady walking. How could this be happening she looks perfectly healthy…. what about the baby I was expecting???
We were tested it wasn’t from us, it ‘just happened’, and the new baby should be fine – we can test new baby when it’s born. Needless to say I had a very worrying pregnancy. Lucia continued to seize over the following year and was in PICU in Temple Street three times – she was loaded with so much drugs it would take days for her to come down, she was hallucinating and would scream continually for hours and hours; but she continued to develop despite all this. I’m still amazed by how strong she is, she has been through more in her 7 years than most people go through in a lifetime.
She’s not by any means seizure free but, seizures have become shorter and she’s thriving with therapy and developing and improving all the time. It has taken a long time to get the right AEDs (anti-epileptic drugs) and she has failed so many..
She started in mainstream school in 2019 with the help of an SNA. In 2020 we came to the tough decision to move her to a special needs school and it was the best decision we made for her, she is thriving there she gets all she needs and more.
The midwife the day she was born was right, she is perfect, the perfect daughter, the perfect big sister, the perfect granddaughter, the perfect cousin, she brings us so much joy and a lot of tears.
She loves school, music, dancing, reading books and of course ice cream!!!And TJ her baby brother was fine, he’s totally wild so maybe he’s half monkey.
