30 minutes with...Kahren

I am a mother to a son who has epilepsy. Our son, Oliver, was born a healthy and happy baby, and yet later started having small infantile seizures. We, as parents, were greatly concerned about him and what was happening. Thus, an immediate medical assessment was done in hospital on Oliver by the Professor of Paediatrics who confirmed the diagnosis as epilepsy. The medication started to control his seizures well, which enabled Oliver to learn and he did great at school. I always cooked wholesome meals as I believe good nutrition is important to health and wellbeing.

I hope for a medical discovery to repair injury to the brain that causes seizures, and for seizures to be detected and stopped in their tracks before they happen, so people can live medication-free. As Oliver’s mother, I felt he is such a blessing to have in my life and am thankful daily for him growing and developing with seizures only rarely.

For five years Oliver has been a volunteer at Epilepsy Queensland and he had been keen- asking me regularly would I also become an EQI volunteer to meet his friends. So, I thank Oliver.

For exactly one year now I’ve been a volunteer at EQI, time goes fast when you’re having fun!

We have a good team-working spirit. Around a large table, we are helping together in usually two or three activities. We rally into smaller teams to enable each person to be using their strengths, doing work they like doing. We help create birthday cards from Little Poss (EQI’s mascot) to be posted out each week to every young EQI member, we have good fun with our art!

Another important task is preparing the mailout of the EQI “Flame” Magazine so that every EQI supporter can read the latest medical updates on epilepsy and read about other members who share their stories on coping with epilepsy. For a few months, we are organising the stock out to businesses and schools in the month leading up to Purple Day, EQI’s major fundraising and awareness day on 26 March every year. We especially love counting the heads of all the cute purple plush toys! It’s an intensely exciting time with lots to do but many helping hands make light work!

Other interesting activities volunteers get to participate in, is the Symposium- listening to specialists and doctors about new medical pioneering trials and supports for epilepsy. We also phone businesses and schools leading up to Purple Day, gathering interest and momentum and taking orders for merchandise. Overall, we all enjoy each other’s camaraderie around the table as we help in teamwork.

What I love is supporting other volunteers who are actually living with epilepsy, getting to know them by listening as they share about their personal story with me, and growing more of an understanding of issues that they face associated with having epilepsy. It’s very humbling being around all these wonderful people of all ages whom each have been on their own brave journey. I like the friendships with those around me each week and whenever possible I encourage them. There’s a few of us that have excelled in the fun of helping Little Poss to create birthday cards with Little Poss’s signature paw mark on it!

Bringing an awareness to the public and into schools and the business sector. The Symposium continues every year, which helps educate and support families who have someone living with epilepsy, health workers, and the public about the very best medical breakthroughs regards to controlling epilepsy.

EQI reaches out to families, supporting them through their child’s early diagnosis to teens and adults through their magazine, keeping them informed and letting them know that there are others everywhere in the same boat. Encouraging those with epilepsy to come together volunteering their skills at EQI. This is good for their wellbeing and mental health, socialising and feeling useful helping others who are the same as them, makes them feel strengthened together.

First aid for seizure response posters distributed during the year are beneficial in epilepsy awareness, which is gaining more public interest.  Public awareness of epilepsy breaks down walls and fears people have long held about epilepsy because there’s usually someone who knows someone living with epilepsy. The essential core of Epilepsy Queensland’s work is giving people living with epilepsy a voice that is becoming stronger across our nation.

Purple Day for Epilepsy has built a steady flow of community support, creating a wave of personal interest within school communities, businesses and people who just want to throw a Purple Day party to raise funds for epilepsy with friends! Epilepsy Queensland’s initiative is bringing hope and comfort to those families who have a loved one with epilepsy, giving them a community and a place where they feel they belong. People are caring for each other as they come together regularly (via Zoom as we do today), and the regular catch-ups in the adult support groups and the volunteer’s epilepsy support group meet for lunch. EQI have a FB page and so do each support group. Everyone truly enjoys hanging out together whether be it volunteering or by phone or the friendship group meetups!

Wholeheartedly YES!!! Epilepsy Queensland are great people to team-up and volunteer with. There is great satisfaction in knowing you’re changing others’ lives for the better. The unpredictability of epilepsy can impact one’s life, yet we let them know there is great supports and they are not alone. It is satisfying to work alongside people who are like-minded, who love helping other people. Whether that is a Purple Day for Epilepsy fundraiser or volunteering to raise awareness of epilepsy by participating in a 5km run to raise money, or a particular community project or mission, volunteering unites different people all together working towards a common goal. Volunteering is a great way to forge lasting friendships. It has helped me to strengthen my skills and grow my confidence as I venture out in trying new things. Surprisingly, it has revealed some strengths to myself that I have! Everyone feels they are on an equal playing field. Volunteering would be a great way for you to upskill for future work opportunities too.

My motto: To freely give is to really live.

Elephants are one special interest of mine for the last eight years. Seeing elephants freed from the heavy burden of exploitation by the tourism trade in countries would be a dream come true. I’d like to volunteer some time at a wildlife elephant nature reserve park. There are two in Thailand that I’ve advocated for, for their brave rescue efforts of many elephants. To see those saved elephants enjoying their lives roaming free amongst their same kind after years of monotonous suffering in isolation and exploitation, to see them healing and happy would be a real blessing.

Seasonal fruits of all kinds in warmer months. Home-cooked meals in colder months, using herbs and spices. Mashed potato and chocolate are some other winter favourites, not necessarily eaten in that order!

I love all kinds; gospel, jazz, country, classical. I like the 70’s music. Lauren Daigle’s song called “You Say”.

I love taking spontaneous photos of people, nature and sunsets! I relax by playing the piano and creating my songs. I like shopping at second-hand shops to find treasures.

I passionately believe first aid and how to assist someone having a seizure should be compulsory for every student as part of the school curriculum. This would create awareness and understanding of epilepsy, fostering acceptance and respect rather than judgment to students who live with epilepsy. It would greatly help ease any insecurity and grow their confidence, knowing they are surrounded by friends who would know first aid should they have a seizure in class.