This March, Hannah’s House has been dedicated to celebrating Epilepsy Awareness Month! The aim of this month is to encourage people to talk about epilepsy and remind those who live with seizures that they are not alone. This project supported by Epilepsy Australia and Epilepsy Action Australia is very close to our hearts, as Hannah’s House supports children with life-limiting or complex conditions, many of who have some form of epilepsy.
One of these children is the lovely 12-year-old Sophie who has been diagnosed with Dravet Syndrome. You may remember hearing about Sophie and her adventures attending her year six school camp last year. In honour of Epilepsy Awareness Month, we reached out to Sophie’s mum Shellie who has bravely come forward to share her story about what life is like when you’re raising a child who has epilepsy.
What is Dravet Syndrome and how does it affect Sophie’s everyday life?
Dravet Syndrome is a catastrophic genetic epilepsy syndrome. Sophie has never known a day in her life where she hasn’t experienced seizures. She is now 12 and seizures are very manageable and relatively stable, however, she will still have ‘little’ seizures (eg. absent seizures or myoclonic jerks) daily.
Dravet Syndrome has massively impacted Sophie’s life. She has a severe physical disability requiring her to be in a wheelchair as she has very low muscle tone, she has developed chronic lung disease from the many aspirations or ventilation acquired pneumonias, she spends 3-4 months of every year as an inpatient at PCH [Perth Children’s Hospital] for seizures and respiratory illnesses and she misses a lot of school, which is her favourite thing to do.
How does it feel to witness your child having a seizure?
Sophie’s daily seizures don’t really bother us that much anymore. We have become accustomed to them. However, when she has a status epileptic event, sh** gets real very quickly! We then deal with needing an ambulance and going into resus at PCH and waiting and hoping that the seizures will stop.
I often don’t get a chance to recognise my own feelings until afterwards and then I guess the feelings I have are of total helplessness. Sophie’s status events are bought on by her respiratory weakness. After receiving so much medication to stop her seizure it lowers her thresholds therefore increasing the risks of pneumonia.
So having to wait, watch and pray for her recovery, all we can do is love her so much that she comes back to us.
Wow, that got heavy, but I really appreciate that I can answer here openly and honestly as there aren’t many forums where us special families can authentically do that.
How long might a typical seizure for Sophie last?
Her tonic-clonics do self-resolve and they are quite short, maybe 10-15 seconds. It’s the cluster myoclonus that’s more tricky. As soon as we notice we jump on the rescue meds so it’s under 5 minutes before we treat. Thankfully this works most of the time but these seizures can go for up to an hour. If she needs to go to hospital, the seizures can last for hours/days.
How does the support from Hannah’s House help you?
Having Hannah’s house nurses support us is invaluable. Knowing we can leave Sophie for some respite if in hospital or have them take her to school and make her feels safe and happy, there are not enough thank you’s to know our gratitude. Our Sophie is such a beautiful girl, our team of nurses treat her as their own when they are with her. As her mum, knowing her caregivers love her and care for her so well I know she is always in good hands.
? You can help Hannah’s House provide care, comfort and joy to children just like Sophie by visiting our donation page.