All moms are heroes but mothers of children with hydrocephalus are #momfighters.
These moms fight every day to ensure their child gets the life-saving care and support they need to live successful lives.
They’re up at 3 am taking their child to the emergency room every time they get paralyzing headaches and vomiting. They drive five hours to take their child to the best neurosurgeon and hold their child’s hand while they’re admitted to the hospital for the 10th time to have their shunt surgically revised.
This Mother’s Day, we salute #MomFighters everywhere. Join us by making a donation to the Hydrocephalus Association in honor of a brave #MomFighter.
Get to know a few of the brave #MomFighters from the hydrocephalus community:
Nalini Patel – Birmingham, AL
No one can ever call Nalini Patel shy and reserved. The neonatal nurse has been fighting for her son, Darshan, for 20 years. Darshan has congenital hydrocephalus and cerebral palsy. Because of the severe brain damage caused by hydrocephalus, Darshan has several disabilities. “By the time he was 1, the doctors told us he would never talk, and that he would be deaf and blind, and yet today he can do all of those things,” Nalini says. Darshan’s condition requires frequent visits to physical, occupational and speech therapy. He has undergone over 100 surgeries to revise the shunt implanted in his brain and almost every time Darshan loses a skill forcing him to relearn something important he had worked hard to learn. But thanks to Nalini and her husband’s constant vigilance and perseverance, Darshan continues to exceed everyone’s expectations. “He can now hear a pin drop in the other room,” Nalini says. “He has changed my husband and I for the better. Before I had him, I was a shy and quiet person but I had to get louder real quick,” Nalini says. Today, she calls Darshan her “miracle”.
Cathy Maccoux – Brooklyn Park, MN
Moms know best. The popular adage proved to be true time and time again for Cathy Maccoux. Her daughter Olivia was diagnosed with post hemorrhagic hydrocephalus (PHH) after being born prematurely at 29 weeks. Olivia had her first surgical shunt implanted at nine months old and while Cathy initially thought that would be the end of it, she quickly learned it was only the beginning of Olivia’s journey with hydrocephalus. Within the first two years, Olivia received nearly 20 brain surgeries to have her shunt adjusted. It was during Olivia’s first shunt revision that Cathy learned to trust her instincts. “I suspected Olivia had an infection but no one seem to know that. Finally, after weeks the doctors confirmed Olivia had a very serious infection. That’s when I knew I had to listen to my inner gut,” Cathy said. Now, 22 years later, Olivia has undergone over 140 brain surgeries. Each procedure is complex since Olivia also has epilepsy and DRESS syndrome, which is a life-threatening hypersensitivity response to most antibiotics. Throughout it all, Cathy has been Olivia’s medical advocate. She questions doctors if something doesn’t seem right, calls specialists near and far, and works to ensure the neurosurgeons and doctors involved with Olivia’s care are on the same page. “I will never give up the fight for Olivia or for all of the other wonderful people out there impacted by Hydrocephalus! Of course, I truly wish I did not have to be the advocate for her health 24/7, but until we have better treatments, more funding and a greater understanding of this condition, it is truly my full time job,” Cathy said.
Melenie Daily – Charlotte, NC
Melenie Dailey feels lucky to be a mom to 17-year-old Olivia. Olivia was born premature at 25 weeks and has both congenital and acquired Hydrocephalus. Since day one, Melenie and her husband Tim were determined that everything possible would be done for their daughter. Despite having undergone 37 brain surgeries, Olivia exceeded every expectation, blossoming into a funny, sweet, compassionate and sassy straight-A student. Life changed drastically two years ago when Olivia developed bacterial meningitis and spent months in the PICU literally fighting for her life. Faced with a traumatic brain injury and severe short-term memory loss, Olivia had to relearn how to speak, eat, and walk, and rebuild her short-term memory and executive processing skills. “I never knew I would have to watch my daughter learn to walk and talk twice,” Melenie said. Missing more than a year of school, Olivia is back this year and doing very well. Melenie settles for nothing less than the best when it comes to Olivia’s health. She advocates constantly and drives hundreds of miles a month for doctor’s appointments and continued physical, occupational, and memory therapy as Olivia progresses in her healing with the goal of attending college and pursuing a degree in Neuroscience Research. Melenie also mentors families with new diagnoses, or families with complex Hydrocephalus issues, and looks forward to when we find a cure for Hydrocephalus so that no other person ever has to endure what Olivia and her family have endured.
Deborah Norris – Columbia, S.C.
When you have a child with a chronic condition, finding the right doctor or team of specialists is key, but imagine having to do that every two years. That’s the reality for military mom Deborah “Debi” Norris. Debi’s 12-year-old daughter Adora was born with hydrocephalus. She also has an eye condition known as Strabismus that was caused by her hydrocephalus. As soon as she receives orders to move due to her husband’s military career, Debi hops into action, researching neurosurgeons and specialists in the area where they’re headed. She reaches out to the Hydrocephalus Association to ask for suggestions and even makes queries on Facebook. “I’ve learned to be proactive before the order physically comes so I can get a head start on figuring out what’s going to work for Adora in the state we’re moving to,” Debi says. To date, Adora has had two brain surgeries and four eye surgeries and every surgery creates scar tissue, which makes future surgeries more difficult. Her hydrocephalus has resulted in some learning difficulties but Debi works with the school to ensure Adora receives the support services she needs to succeed. “Adora continues to amaze us. She can play the piano and duplicate songs just by hearing them,” Debi says proudly. Soon, Debi hopes to use her military experience to help other families impacted by hydrocephalus. She is working with HA on forming a new network aimed at military families. The goal, Debi says, is for military families to know they’re not alone; that they have a support network that can help them through the process.
Amanda Garzon – Bethesda, MD
Hydrocephalus is considered an invisible condition. That’s because for many children and adults it’s not always obvious that they are living with hydrocephalus. For Amanda Garzon’s daughter Gabi, that proved especially challenging at school. Gabi acquired hydrocephalus from a brain bleed as a preemie. While she’s had 16 brain surgeries and a seizure condition, 17-year-old Gabi does well at school. However, that doesn’t mean she doesn’t need support services to help her succeed. “Gabi has always been bright, currently an Honors student in high school, but schools are reluctant to provide services for a condition they can’t see or don’t know. Executive function, memory, and anxiety throw major road blocks to success in the classroom…and beyond,” Amanda said. Thankfully, Gabi has Amanda who works hard to help teachers understand the complexities of hydrocephalus and its impact on learning. More importantly, Amanda brings everyone together – from the teachers to the guidance counselors – so they can work as a team to support Gabi. She also tries to find creative ways to support Gabi at home, and has taught Gabi to be her own school advocate. When she’s not being a mom, Amanda uses her experience as a parent to help others, serving as the Hydrocephalus Association’s National Director of Program Services and Communications. “I’ll never stop pushing every step of the way to ensure Gabi excels!” she says.
Will you help us honor #MomFighters this Mother’s Day? Here’s how you can help:
- Make a one-time donation in honor of your mom or another brave mom
- Become a sustaining member through our Monthly Giving Program (Gifts of just $20 a month make a huge difference!)
- Create your own do-it-yourself fundraiser through the Make Waves for Hydrocephalus DIY Tool.
- Tell your mom you love them! (they deserve it!)
Donate today and help us support moms and families! Your contributions are essential to helping us fund critical research so we can find a cure for this condition and identify better treatment options!