The transition from being a child to an adult can be a challenging and exciting time. As a young person living with epilepsy, or another chronic condition, the late teenage years can be the most challenging time of one’s life.
We first met Daelle, her Dad Dave Bunker and Stepmother Michelle King over eight years ago. Daelle, who is now 18, lives with epilepsy, but takes on each challenge of her late teenage years with a smile on her face. Behind that beautiful smile is a wonderful support network, including two loving families, dedicated to ensuring Daelle has the fullest and happiest life possible.
At the age of just six months, Daelle was diagnosed with cerebral palsy followed shortly after by a diagnosis of pachgyria. When Daelle was four Michelle became her Stepmum. It was not long after that, Daelle had her first seizure and was diagnosed with epilepsy.
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Daelle has absence and focal seizures every day that affect her concentration and energy. She also has two to three difficult tonic clonic or atonic seizures a week. After some of these seizures, Daelle has difficulty maintaining her airway and one time even broke her leg. Unfortunately, they can occur any time of day and there are no real signs one is coming.
Michelle relayed: “Afterwards she is unconscious for an hour or two, and is very tired for a day or two. Her tonic clonic seizures are very violent, and she can cry out, and have large convulsions. They last between three and five minutes, and we have to make sure she doesn’t hurt herself or other people as her muscles contract so strongly.”
Michelle and Dave believe epilepsy is the worst of Daelle’s disabilities. She already had severe cerebral palsy, was in a wheelchair, and had profound cognitive impairments, but it is epilepsy that has had the biggest effect on Daelle’s life, and that of her family.
Michelle explains: “Seizures have meant Daelle has lost a lot of what she used to be able to do when she was younger. Her epilepsy means she misses school, events, and fun. She has been to hospital many more times than anyone would wish on a child. She loses time, skills and abilities, and sometimes, parts of herself.”
Epilepsy Queensland has been there for Daelle and her family since Michelle first got in touch after the seizures got worse at the age of 10. They were at a loss as to what to do.
Michelle said: “We didn’t want to really accept how much worse the seizures were, that this was our new “normal.” We met with an Epilepsy Queensland family support worker who came out to see us at home, and we had many long talks with her. It was so helpful to be understood by someone with so much experience with seizures. They also told us about tilt-in-space wheelchairs, which tilt back so that the person doesn’t slump forward in the chair. It was life changing for us!! ”
We talked a lot about the challenges but also the joy that a happy, smiling Daelle brings to their family. Michelle lights up as she speaks about Daelle: “She is full of joy. She loves to laugh and enjoys her life. She loves to drive in the car with the wind in her hair. Her default is to see the joy and happiness in what is in front of her. She doesn’t complain, and is full of patience. She shows so much love and happiness to others, which has made all of her family very grateful!”
Epilepsy Queensland is here to support everyone living with epilepsy and their families. With your donation, we can help more children like Daelle to live full lives and let their smiles shine through this Christmas.