Looking Back…Moving Forward: Telling Her Own Story

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Olivia lives with hydrocephalusYou can be walking down the street and pass someone with hydrocephalus, and never even know it. That’s how it has been for Olivia Maccoux. Olivia was born with hydrocephalus, but many of her classmates and members of her community would not know she lives with this challenging condition. They would not know she has had over 90 surgeries since birth. Olivia plays several contact sports, is a senior in high school and maintains all A’s and B’s on her report card.

As we continue our interview series in commemoration of our 30th anniversary, our intern, Taryn Garn, sits down with Olivia
to talk about how, through her experience with hydrocephalus, she feels she has been given the opportunity to grow and help others who are struggling with the challenges of living with this condition. She wants individuals living with hydrocephalus to know that no one is alone, and that it is possible to live one’s dream. In her words, “This can only make you stronger.”

HA: Has the Hydrocephalus Association made an impact on your life? If so, how?

OLIVIA: The Hydrocephalus Association gives me opportunities to be involved with the hydrocephalus community. By doing this, it allows me to help others who struggle with the same things that I have through my life, and also allows me to hear other’s stories and learn from their experiences. However, the biggest impact HA has had on me (and many others with hydrocephalus) is knowing that I’m not alone in the fight against the condition.

HA: If you’ve attended an HA event, what is your favorite HA memory?

OLIVIA: The national conferences are always a blast. First of all, it’s like a vacation. I’ve also formed many friendships and supportive relationships with people who are not only my age, but know exactly what living with hydrocephalus is like.

My family and I participate in many of HA’s events. My parents have been going to the conferences since I was very young, and I have gone to the last two. I also have participated in the annual hydrocephalus WALKS in my community. My team, Team LIV, has raised over $6,000 in the last 4 annual WALKS. Knowing that we’re walking to find a cure, and knowing that the money goes to research and treatment, gives me extra motivation. It’s fun to see my family, friends, and people I barely know get involved in this amazing cause that means so much to me.

HA: What else would you like to see HA do?

OLIVIA: Keep doing everything they are already doing!

HA: Where would you like to see HA 5 years from now?

OLIVIA: Since HA just moved to Washington D.C., I see (and hope for) HA growing tremendously in education, research, legislation and advocacy, and, because of that, being able to further help individuals with hydrocephalus and finding better treatment options…even a cure.

HA: What message do you have for individuals your age living with hydrocephalus?

OLIVIA: As often as it feels like you are…you’re never alone. You’ll go though some really terrible, painful times and there will be some really hard days. You may even feel like you can’t do certain things like graduate or go to college, get married, have kids; but trust me, you can. If you want to do something bad enough, you can do it. Don’t let this condition stop you. Living with hydrocephalus will make you a much stronger, better person in the long run. I’m speaking from experience.

HA: What message do you have for the general public about yourself, HA, or living with hydrocephalus?

OLIVIA: Most people have either never heard of hydrocephalus, or they don’t have any idea what it actually is. So I’m here to help clear some things up. First of all, hydrocephalus can affect any person at any age. Secondly, not everyone with hydrocephalus is the same or has the same story. We all have our own. For people who aren’t living with hydrocephalus, know that hydrocephalus can sometimes be hidden. Most people who look at me would never guess there’s anything wrong. Despite popular belief, not everyone has shaved heads or large skulls. With hydrocephalus, being able to be hidden can also be its own disability. We do sometimes struggle with things other kids don’t. That doesn’t mean all of us living with hydrocephalus face cognitive challenges, though. We can do everything others can do; sometimes we just have to do it differently. I’ve had hydrocephalus since birth, I’m a senior in high school with A’s and B’s (looking forward to college), I play three contact sports a year, and I’ve also had over 90 brain surgeries. So, we can do everything you can do. Don’t treat us differently. Finally, even if we aren’t in the hospital or having surgery, it doesn’t mean we don’t have bad days or hurt.

Basically, hydrocephalus doesn’t define who we are as people and it doesn’t define our lives. We want people to support us, but not treat us differently.

HA: What message do you have for the staff of HA?

OLIVIA: Basically, just thank you. Thank you, beyond thank you.

HA: What message do you have for the Board of HA?

OLIVIA: Keep up the good work! You’re doing great, and it’s only going to get better!

HA: What message do you have for the founding members of HA?

OLIVIA: You’ve made my life (along with the million other Americans living with hydrocephalus) so much better, and easier. So, thank you!

Hydrocephalus Association national conference

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