Hundreds of walkers gathered on the lawn of Soldier Field to support those that are living and have lived with Hydrocephalus.
Hydrocephalus is a condition that has no cure, and its only treatment requires brain surgery. One to two of 1,000 babies born are affected by Hydrocephalus.
Amber Hiland, of Sycamore, was one of those walkers who took part in the August 18 event in memory of her son, Carter Hiland. We asked her some questions:
What is your Hydrocephalus story?
My brother, Lennie, was born with hydrocephalus in 1973. Our family didn't know that it was genetic because no one else in the family had it. Three weeks before my second son, Carter was born, we found out that he had x-linked hydrocephalus. Less than 24 hours after he was born he had an EVT. At just over 3 months old we were referred to Children's Memorial to Dr. Arthur DiPatri. The EVT wasn't successful so he had a shunt placed. Carter was doing wonderful and was progressing so much more than any doctor thought he would. Then just days after his first birthday his shunt failed and he was life-flighted to Children's Memorial. He lost his battle with hydrocephalus just five days after his first birthday.
How has it impacted and altered your life?
Since my brother was born with hydrocephalus, I have always lived with it. The doctors discouraged my parents from shunting my brother because they didn't expect him to live more than a few months. My brother was severely affected, he couldn't walk or talk and needed 24/7 care. He passed away when he was 19. Due to him needing constant care, there was a lot my family could not do. When Carter was born, I made a promise to not only him but also my husband, oldest son and myself that I would give us the most normal life possible. I didn't want my oldest son to miss out on the same things I did as a child.
What has been the biggest struggle Hydrocephalus has caused?
Losing my son. I could deal with the constant doctors appointments, therapists and all that comes with having a special needs child. The loss is different.
How has it affected long term outlook and goals?
One day you're celebrating your son's first birthday and seeing him smile, the next day you're rushing him to the hospital and watching him being flown to Chicago fighting for his life. It teaches you to appreciate every day you have with your loved ones. Tomorrow is not promised.
Have there been any doctors or hospitals that have stood out over the years?
Dr. Arthur DiPatri and everyone at Children's Memorial (now Lurie's Children's Hospital).
What do people not know about Hydrocephalus that you think they should?
You don't necessarily have to be born with it. Anyone can acquire it, at any time of their lives.
What made you want to walk for Hydrocephalus?
We started walking last year in our son's memory and to raise awareness. Our team, "Carter's Crew" will walk every year, it has become a tradition.
Where do you see yourself in five years?
In five years I hope to still be participating in the Chicago Hydrocephalus Walk and raising awareness. I also try to educate others on what hydrocephalus is. When I was growing up it wasn't talked about and there wasn't as much research on the subject. My life's mission is to talk about it and continue to educate others. It's also my way to keep Carter's memory alive.