Every 33 minutes a family will have their life turned upside down by an epilepsy diagnosis.
For first-time parents, Sapphira and Jones, the pending arrival of their baby girl filled them with joy. Like all new parents, they knew life was about to change forever. Becoming Mum and Dad to baby Valerie was a dream come true and her sweet smile filled them with love.
As baby Valerie settled into a routine of sleeping, eating, and playing, her parents Sapphira and Jones began to adapt to life as new parents. They were gaining the usual confidence of caring for a newborn and even catching up on some much-needed sleep! Her besotted grandparents could not get enough cuddles, and life for the family was filled with delight with each new milestone reached.
“It was midnight, when I was woken by Valerie, now three and a half months old, making a strange sound,” explains mum Sapphira. “At first, I thought she had the hiccups, but I instinctively knew this was not her usual baby sounds. I jumped out of bed to sneak a peek in her cot. Panic immediately rose inside me; her tiny body was jerking, and her eyes were flicking abnormally. There was drool coming from her little mouth and she was making strange noises.”
Sapphira knew something was wrong with her baby and screamed for her husband Jones, who immediately called 000. What they did not know was that their baby Valerie had just experienced her first seizure and would soon be diagnosed with epilepsy.
Valerie was admitted to the Queensland Children’s Hospital, something that would soon become a regular occurrence for the family. After extensive tests, Sapphira and Jones were given the life-changing diagnosis - that their baby girl had epilepsy.
Sapphira shares how she felt when her family’s life was suddenly turned upside down. “At first it was complete fear. Epilepsy was not something I had been acquainted with. I had never witnessed someone have a seizure before.”
Then I felt utterly lost, to know that a child as little as mine could experience violent seizures was an awful revelation. I spent a lot of time asking why, and I shed many tears. I could not understand why my baby girl had been diagnosed with epilepsy. “
Please donate today to ensure we can be there to help parents like Sapphira and Jones understand and adapt to family life with epilepsy. Your donation can give them hope for a brighter future.
“Then we were referred to Epilepsy Queensland by our neurologist,” says Sapphira. “We could not have done this without them. We spoke with Donna, who was incredible with her advice and gentle demeanor. We were struggling with hospital admissions, so it was lovely to have a person on the other end of the phone who had the medical knowledge but was also kind and understanding.”
Each year Epilepsy Queensland answers more than 3000 calls for help. Our team of experienced epilepsy support workers are there to guide families as they adapt to the challenges of life for a child with epilepsy.
Little Valerie is now two and a half and has already trialed seven different drugs in an attempt to control her epilepsy. She currently takes three different medications but is still experiencing seizures.
“The months go by so excruciatingly slowly, only punctuated by seizure upon seizure,” says Valerie’s mum. “Then the routine begins again. I call an ambulance; I rush to the hospital where my hopes are dashed. I receive the news that this medication simply did not work for my little girl.” It will take another two painful months to wean Valerie off the drug that failed and then start the experiment again. Another medication that might work – or might not!
Valerie is prescribed an emergency drug that her parents need to administer at home when she has a seizure. By providing training to Valerie’s extended family on how to do this, we were able to give her grandparents the confidence to manage Valerie’s seizures, which has allowed her exhausted parents to have the occasional rest.
Epilepsy Queensland educators deliver education and training, develop management plans, and help families to navigate the National Disability Insurance Scheme (NDIS) so that children with epilepsy can live their very best life.
“Epilepsy Queensland gave us the support we needed, they were instrumental in helping us secure the seizure monitors and cameras that our daughter relies on to stay safe,” says Sapphira.
Raised so far