Patient determined to change the future for those with hydrocephalus

By Olivia Maccoux

Team Liv WALKS for hydrocephalus research.

I was born at 29 weeks and was diagnosed with a condition called hydrocephalus (abnormal amount of spinal fluid in/around brain). I’ve lived with and dealt with the condition for the past 17 years and will continue to for the rest of my life.

A life with hydrocephalus means NOTHING is certain. It is both physically and emotionally draining on me and everyone around me. This is a life threatening condition, and the sad part is the lack of research that is being done to help the over one million Americans who live with it. Treating hydrocephalus costs more than $1 billion annually, yet, the National Institute of Health invests approximately only $1 million a year on hydrocephalus research.

Over the last 50 years, there has been no significant improvement in hydrocephalus treatment and absolutely no progress toward prevention or a cure. The only treatment is brain surgery, where a surgeon implants a device called a shunt to drain the fluid. However, 50 percent of shunts fail within two years.

I’ve never had a shunt last for two years. I’ve actually had times where the shunt has only lasted a few hours, which resulted in my immediate return to the operating room for a new one. To date, I’ve endured more than 90 brain surgeries and have been in critical condition because of hydrocephalus.

The Hydrocephalus Association organizes WALKS every year to raise money for treatment and research. I’m determined to help change the future for everyone who struggles with hydrocephalus and its complications.

My WALK team, Team Liv, is also committed to helping this cause. We’re looking for anyone who would like to walk with us, donate, or both! Donations of any size are gratefully received and are tax-deductible. Your donation will help support critical research so that I and the one million other Americans living with the challenge of this condition can lead a better life. Learn more about donating.

Olivia is a patient and a Youth Advisory Council member. Read Olivia’s blog post earlier this year on juggling school during a hospitalization.

3 thoughts on “Patient determined to change the future for those with hydrocephalus

  1. Tim Kehoe

    Olivia, you’re truly amazing! I’ll be wearing my Liv t-shirt with great pride that weekend!!

  2. Olivia (Liv)

    Thank you to everyone for all the support and kind words! Please if you can, make a donation to Team Liv and/or join us for a fun and rewarding day at the WALK on September 15th!

    Thanks again!

Leave a Reply

Your email address will not be published. Required fields are marked *

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>