Madaline Guilk embodies the spirit of determination. The nineteen-year-old from Ipswich, who lives with a rare form of epilepsy called Jeavons Syndrome and Autism Spectrum Disorder (ASD) is a resilient person who is focused on giving back. Proud Mum Amy says: “Madaline hears the word “NO” all the time but she wants to succeed. She wants a big successful life.” She says: “I’m doing this.”
Early Challenges
Madaline was diagnosed with occipital lobe epilepsy at four years old, after experiencing eyelid myoclonia (brief and repeated jerks of the eyelids). Madaline also experienced absence seizures and was later diagnosed with Jeavons Syndrome. She has to be careful with light exposure and not to overheat, as her medications increase body temperature.
Madaline experienced her first tonic-clonic seizure at 11 years old when a change to an alternate medication was initiated. For a while, after this time, Madaline’s experience of epilepsy was less eventful, although she continued to experience other challenges related to her ASD.
A Turn for the Worse
Things took a turn for the worse as Madaline became older and transitioned from a child to an adult. It became necessary for her to change to an anti-seizure medication with less risk to women of child-bearing age. Madaline was in the final stages of completing her Year 12 schooling during this process.
Unfortunately, whilst weaning off Zarontin onto the new meds, Amy noted that Madaline’s eye flutters increased and her moods intensified.
One afternoon after school, Madaline was walking erratically and displaying other behaviours that were out of the norm for her. Amy immediately recognised something was very wrong.
Amy describes the experience at the first hospital where they presented as “horrific.” Madaline was admitted on a weekend, and there was some difficulty obtaining her health records from her usual treating hospital. Amy also felt Madaline was not being treated seriously enough and there was a lack of understanding about her daughter’s condition from the healthcare providers. Despite Madaline being given medication to “calm her mind”, the atypical behaviours continued.
Madaline was discharged, but four days later, she was admitted to a different hospital after no improvement. Amy says with the help of an amazing nurse, she invoked Ryan’s Rule to get a second opinion:
“It was thought that Madaline had been in a state of non-convulsive Status Epilepticus (prolonged seizure activity) for four days,” Amy relays.
By this time, Madaline’s speech was slurred, she was saying strange words and unable to walk. The doctors wanted to induce a coma to halt the seizure activity and told Amy: “This is as bad as it is going to get.”
An Intense Time
Amy recalls: “Madaline needed to be guided even small distances, such as to the toilet. She was “out of it’ and had memory loss. For example, she couldn’t remember what she’d just eaten. She was saying random words and touching her forehead when instructed to touch her nose. This was nothing like my child.”
Amy says this was a very intense time. “It was awful, everything felt doom and gloom, I had a daughter full of life that couldn’t get out of bed.”
It was decided Madaline should completely stop her current medication and resume her previous medication, and within five hours, she was out of Status, became a bit more clear and progressively improved.
Due to photosensitivity, for three days, Madaline’s hospital room had no light, no TV and she had to shield her eyes when a doctor or nurse entered the room. Madaline went home but after seven days, she was soon back at the hospital as she was still having atypical sensations, such as head spins and spent the better part of the month of September in and out of hospital.
It was at this time that Amy engaged with the services of Epilepsy Queensland via our helpline.
“Just to have someone to clarify things, to understand what you are talking about without having to explain. It helped to not feel so afraid.”
A Brighter Future
Recently, things have continued to improve for Madaline and she can now focus on a brighter future. She graduated from high school, which was not always a given due to her health challenges.
Madaline has a passion for child care since she completed work experience whilst at school. “The staff and children just loved her,” Amy says. Today, Madaline is working towards a Cert 3 in childcare qualification at TAFE.
Amy recounts:
“Being in a classroom environment and having so much going on and many people talking – it can be hard for Madaline to absorb information. She puts in a lot of work at home.”
It is evident her family admires Madeline’s dedication: “She gets up everyday, does her study, she perseveres. She keeps going”
Whilst Madaline requires a lot of assistance with her studies, Amy relays that the NDIS is really helping Madaline through this journey. She says the support received from Epilepsy Queensland helped immensely:
“Their input helped us get enough funding to get Madaline the help to go to TAFE and also get out and about in the community- just going on some adventures.
The phone support from Epilepsy Queensland’s services is what got me through as I was a complete mess. We also did some training about seizures. We as a family are so grateful to Epilepsy Queensland.”
A Life of Purpose
There’s a lot to admire about Madaline. She has completed The Starlight Foundation’s bikeathon and rode 205Km in 30 days- raising $1505.00! She also volunteers with Meals on Wheels twice a week assisted by a support worker.
“Madaline is very social and loves to have a purpose,” says Amy.
Happily, 27 September of this year marked 1year seizure- free for Madaline. The family celebrated with an afternoon tea, (and a beautiful cake, see below) and true to form, the family wanted to give back, collecting $250 to donate to Epilepsy Queensland.
Amy and Madaline also appreciate the personal stories shared by members of our community.
“These stories got us through so much. It reminds us that we are very lucky in many ways. If Madaline’s story gives even one person hope then that would make us very happy.”
Thank you, Amy and Madaline for sharing some of your own challenges and achievements and helping to raise awareness of epilepsy.
*Story published with the permission of Madaline.
