About PHF

FOUNDING MEMBERS

President- Kim Illions
Vice President- Michael Illions

On July 25th, 2005 at 8:11am our little miracle baby boy Cole, came into the world. Weighing just 7lbs, 4 oz, the baby that we were told wouldn’t survive, went immediately to the “well” nursery. Yes, he was born with Hydrocephalus, but to us and everyone who would come to know him, he was perfect in every way.

On the second day of his life, Cole had his first shunt placed. He came through surgery with flying colors. That turned out to be the first of several surgeries to combat problems due to Hydrocephalus. From even before Cole was born we were searching for answers and a support system on this condition called Hydrocephalus.

With the assistance of Cole’s Doctor and Nurses at his hospital, we were asked to be the parent liaisons to a new first of its kind in New Jersey Hydrocephalus support group serving the Tri-state area.

Working with other families, we are committed to funding a cure for Hydrocephalus and have started the Pediatric Hydrocephalus Foundation with that goal in mind. Our mission is to offer support and strength to other families dealing with Hydrocephalus, and with your help we will be successful.

Cyndi Lewis – Secretary, Board of Directors; New Jersey

I have been happily employed by the same company for over 33 years. I have extensive training and background in meeting and event planning.

I have been married to my husband John for 20 years and we have an amazing 13 year old resilient daughter that has Ehlers Danlos Syndrome.

I have been heavily involved in different organizations over the last 10 years and am looking forward to this new opportunity. I hope that my diverse experience and interests are beneficial to my new endeavors.

To enjoy life, I love to relax and hang with our pets, 2 dogs and 3 cats and travel as a family!

Bella Sacharczyk – Board of Directors; Massachusetts

I am a daughter, a sister, and a loving girlfriend but most of all I am a Hydro hero who is
constantly told “you can’t” and “you won’t” and I have made it my life’s mission to “do” and
“accomplish” everything and anything I set my mind to.

Like many of my Hydro Heroes, I have my own unique journey with hydrocephalus. I have my own struggles and obstacles, but it wasn’t until January 2014 when my mother and I found the PHF that I realized I was not alone in my journey. At that point, I began owning and sharing my story and struggles.

I began fundraising and soon became the Massachusetts chapter director with my mother Denise Sacharczyk. Now a decade after finding and joining the PHF, I am a soon-to-be graduate with a bachelor’s degree in biology with plans to pursue a career in research in which I plan to focus on early brain development and the development and treatment of hydrocephalus.

I will forever be grateful for the PHF and all they do. They have played a huge role in all that I have accomplished, and I am honored to serve as a Member of the Board.

Heather Shanks – Board of Directors; Michigan

Hello, my name is Heather Shanks. I am from Michigan, and I am mom to Clara, who has congenital Hydrocephalus. Clara was diagnosed with hydrocephalus when I was 19 weeks pregnant. I am a middle school social studies teacher by profession. My family has supported and volunteered to work with the Pediatric Hydrocephalus Foundation since Clara was born over seven years ago. We appreciate being a part of a supportive community, while also being able to fundraise and choose where our funds go.

Having a choice in research empowers us and gives us hope of a brighter future for Clara. Our entire community has hosted various events such as restaurant tip nights, raffles, and annual walks. While our events take time and effort, the support and outcome are phenomenal. We look forward to this year, and hope it brings change, medical breakthroughs, and a stronger community.

Roberto Hajek – Board of Directors; New Jersey

My name is Roberto Hajek.

I’m 38 years old.

My son logan has been diagnosed with Hydrocephalus since 3 months old.

I’m in retail and sell furniture for Ashley Homestores.

My wife Ashley and other son Luke have been participating in the PHF events for over 7 years now.

We have been blessed being part of this group helped us a lot with Logan and getting the help he needs.

I look forward to the future with the PHF and seeing what we can do to help anyone with this diagnosis.

Ashley Hajek – Board of Directors; New Jersey

Hi everyone! My name is Ashley Hajek and my husband’s name is Roberto Hajek. On December 2, 2015, our hydro hero, Logan Michael Hajek, made his grand entrance into the world. He was a beautiful, snuggly, happy little baby. Shortly after birth, Logan began exhibiting symptoms of hydrocephalus, yet he was overlooked by several doctors. At about three months of age, Logan was treated for a stomach virus at a nearby hospital. We both knew that our baby was not suffering from a stomach virus and that something was truly wrong. After researching his symptoms on our own, my husband and I begged the doctors to give him an MRI. His brain was under severe pressure and he was quickly airlifted to a hospital in Philadelphia.

Eight years later, he has had nine brain surgeries and one feeding tube surgery. He is an amazing little boy who is making strides every single day. Logan is capable of so many things and is the true definition of strength, love and positivity. Our goal is to advocate for every child suffering and be a voice for the many that have none. Every single doctor and professional truly needs to understand hydrocephalus related symptoms and that one size does not fit all.

We have been married for over ten years and are the proud parents of Luke, age 11 and Logan, age 8. I have been an educator for many years and Roberto works in sales. We reside in Yardville, New Jersey and love our goldendoodle, named Josie and cavapoo, named Mylo.

As a family, we love going to the beach, playing games, baking and of course, going on vacation! We try to live each day to the fullest and remember how precious life truly is.

Christina Brown – Colorado State Director

Greetings from Colorado! My name is Christina and my son has Hydrocephalus. My husband and I had our first son, Micah in 2006. He is full of life, passion and smiles! We welcomed our second son Jaden in April, 2010. Jaden was much anticipated by all family and friends. He was born “healthy” and once mommy recovered from a c-section we were able to go home three days later.

Between Jaden’s well checks his head was growing at a very rapid pace. We have a history of other brain conditions in our family so we watch the kids closely for head size. We went and had an ultra sound done and were delivered the news that Jaden had a large amount of CFS surrounding his brain. I will never forget the first time I heard the word Hydrocephalus. After this we made a trip 350 miles away to see our wonderful Neurosurgery team at Colorado Children’s Hospital. On our first MRI I was blown away to learn Jaden had also suffered a Stroke along with a large amount of fluid on his brain. Jaden has been blessed to only have one shunt placed so far- sometimes I am afraid of when our luck is going to run out.

Jaden has brought me to a place in life where I would never have thought I would be. Jaden is now 2 and receives physical therapy, occupational therapy, speech therapy and soon to be riding therapy. He is a happy little jabber box and is truly sweet, kind and loving.

This journey has also made me more grateful and filled with gratitude for each day we have. I want to raise awareness and educate people about this life changing path that is so prevalent. I also hope to share all I have learned and learn so much more from being able to be part of the PHF and PHF Colorado, parents need support in this journey that will forever change our children’s lives.

Kylie Thacker – Indiana State Director

My name is Kylie Thacker. I am a mother of two perfect and handsome little boys, Jax John and Noble Zain. I found out at my 17wk ultrasound that my son, Jax John Thacker was you going to be born with a condition called Hydrocephalus. I knew very little about this and I was TERRIFIED, and the doctors gave me there speech about “options” for my pregnancy. I myself didn’t believe I had options. He was my baby boy, and he was perfect. Jax entered our world seven weeks early at 5lbs and 7oz. He was my miracle. Yes, he did in fact have Hydrocephalus, but this little boys is a fighter. My son was in the NICU for 8 days and we were on our way home.

At eight weeks old Jax has his first shunt placed. After his surgery he flat lined in my arms; a mother’s worst nightmare. The angels at Riley Children’s Hospital saved his life. At 8 months old his shunt malfunctioned. He had a replacement surgery and by the love and grace of God he has been wonderful since.

I joined the PHF family in honor of my son Jax. He is the best big brother to his Brother Noble, the happiest baby I know and his heart is so soft and tender. He melts anyone he meets. My children are my motivation, and it is my goal to make sure that no matter what situation parents are going through; there is someone to always listen, and love. I am here to help and comfort, guide and educate fellow families who have been effected by Hydrocephalus and to let them know YOU ARE NOT ALONE.

GOD BLESS.

Denise Sacharczyk – Massachusetts State Director

Isabella Ruby was born in 1998 on the first day of fall and we waited five long years for our precious baby girl. But shortly after she is born she is diagnosed with bacterial meningitis, she has a stroke and seizures. She must spend many weeks in the hospital to receive heavy doses of antibiotics. The day after we take our little baby girl home we are sent for an MRI and her Neurologist sends us to the hospital, Isabella needs emergency surgery to put a shunt in she has Hydrocephalus caused by all the damage in her brain from the meningitis and the stroke.

We rush back to the hospital and she is then rushed to Boston Children’s Hospital where they do emergency surgery at 1 am on Thanksgiving Day. We are alone and scared. No one explains to us what exactly hydrocephalus or a shunt is. They do not even show us what a shunt looks like. I will not even see what one looks like except in a book that I research myself until Bella does her science fair project in 2010.

She is the most beautiful person I know. She has had 17 brain surgeries to replace her shunt or revise it.

In 2011 she had 6 of these surgeries, including the insertion of a left shunt. So she would have a right and a left shunt, due to the non-communication of her ventricles. During this surgery they perforated her bowel and did not know it of course. So when we were getting her ready to go home she got a fever of a 104.

So they rushed her back to surgery and found the perforation and had to repair that and they also had to externalize her two shunts until the bacteria was gone. She was once again a very sick girl. She was in the hospital for another month. This time during Christmas. It took her a long time to recover from this experience.

Then in 2013 she has 3 more replacements. She now has a right shunt that is a programmable shunt and a VPL shunt on the right side. They both drain in her lung cavity.

She has severe spasticity in both of her legs and arms and this makes it very hard for her to walk and do small motor activities. She falls a lot and sometimes has bad days where her legs just don’t work right.

Isabella is a wonderful 15 year old teenager that works very hard to get good grades and she did her science fair project on her shunts and it went all the way to Semi-Nationals. She is working on furthering her project. Isabella is my inspiration. She is the love of my life. She has overcome so much to get where she is today.

Hydrocephalus is a challenge for Bella everyday. There is not a day that goes by that she does not have a headaches, shunt pain, pressure in her head. There is not a day that goes by that she doesn’t fall down or bump into something or someone because her balance and spasticity is so bad. Her shunts malfunction and her shunts hurt her all most everyday.

We need to tell everyone that hydrocephalus is real, its brain surgery, not just one time but many times. And our children could die from this non-curable illness. Share your story. Share Bella’s story.

Hydrocephalus is the most common reason for brain surgery in children.

Donna West – Michigan State Co-Director

My husband and I have been together now for 12 years. We have 4 beautiful children ranging in ages from 11 to our youngest, whom is almost 8 months. It is our youngest that has brought us here to the PHF. It was a slightly troubled pregnancy, with a very easy delivery to a perfectly healthy baby girl on Dec. 24, 2010. We really had no clue what was in store for us at that time.

When she was about a month old she started to have this really awkward head position when in the car seat. At her two month checkup we asked the pediatrician about it, and she said to schedule a head ultrasound, but that she was pretty confident it was really nothing at all. Well, that “nothing at all” turned into something even she did not expect to find… Hydrocephalus ex vacuo was our first diagnosis. We were told she had a significant loss of white brain matter and that was why she has hydrocephalus. After making numerous appointments with specialists that were set for a great length of time away, she proved the doctors wrong!

April 26th, at 4 months of age she had her checkup and her head had grown 5 cm in only 2 months! The pediatrician was alarmed and so she sent me to the ER. That was when we had our first shunt placed. To make an even longer story short in the next 11 weeks she would endure 8 surgeries; 3 shunt placements, 4 EVD’s, and 1 surgery to reopen the second shunt site to pack it with some material as it was profusely leaking. After the last shunt was placed, the neurosurgeon informed me that her brain is indeed there and starting to form and come off the skull! It had indeed developed; it was just pushed against the skull the whole time.

During all of this, it was very hard to find local information, support groups, or anyone who knew anything! Yet, I found the PHF and they immediately helped me out despite the distance. Without their help and assistance, I do not know where I would be. Also during this journey I have met some other families who are going through this journey and meeting them was chance at best, but we have all said the same thing… where are the local resources? Well that is why I have decided to become a Co-director for the state of Michigan and be the local resource for many.

Casey Simino & Anthony Simino – Missouri State Directors

My husband and I have been together for more than 13 years and married for 7. We have 4 amazing children of which Ayden is our second born. He is currently very soon to be 7 years old and in 1st grade. Ayden was born at 11:11 am on February 23rd, 2006. He had already been diagnosed with porencephaly and partial agenesis of the corpus callosum and the doctors knew he was at risk for hydrocephalus. He was delivered by planned C-section at 37 ½ weeks after an amnio showed mature lungs, and we were as prepared as we could be. We had already met with the neonatologist and he and his team were in the operating room waiting for our little guy with us. We were at the best hospital in the area with the highest level NICU. Still, I couldn’t help feeling an impending sense of doom. It took all of half a second for Ayden to fill the huge room with his monstrous screams. Of course, he was perfect. He was even allowed to stay with me on the way down to recovery and visit for a few minutes. Then they took him, and I wouldn’t get to see him again until around 11pm when they were fed up with me throwing a fit and allowed me out of bed to visit him. He was in the Special Care Nursery (not even NICU!) and was hooked up to lots of monitors, but nothing else. The next day he went for his first MRI on his own and a head ultrasound.

Aside from a little bout with jaundice, his first three days of life brought nothing eventful. After we found a pediatrician (our current was a family practitioner and very honorably admitted that he didn’t feel comfortable caring for Ayden and preferred that we find an actual pediatrician) and scheduled an appointment with the neurosurgeon, Ayden was cleared by the neonatologist and neurologist to come home on day 3. Ayden was born on a Thursday, went home on Sunday, and had his first appointment with his pediatrician that Tuesday. At that appointment his head measured 36.1 cm; a little on the large side, but not terrible. He had his appointment with the neurosurgeon one week later. At that appointment his head measured 40cm. It had grown nearly 4 cm in a week. The NS kept checking and rechecking. She even called the doctor’s office to make sure the paper I had with his measurements was right. She came back and tried to relay as best she could what hydrocephalus was and what it meant for Ayden. I’m pretty sure I heard nothing she said. I was given a pamphlet that appeared to date back to the 80’s and sent home with a promise of surgery.

Ayden was diagnosed on Tuesday and had his shunt placed on Friday, March 10th 2006, at just 15 days old. I was a wreck. I remember speaking with a nun who was volunteering in the surgical waiting room. When I told her the surgery my son was having she started telling me how she was a nurse in the 1940’s before there were shunts and how many children died as a result of hydrocephalus. I know she was trying to help, but that wasn’t a conversation I wanted to be having at that moment. Knowing all that I do now about this dreadful condition, I wish I had taken time to listen to more of what she had to say.

Ayden’s shunt functioned properly for a little over 3 months. He had his first revision in late June. In August we were back. He had an external drain placed for a few days and then another revision. While knowledge of the wrath of hydrocephalus leads us to believe that the list will go on, this is where Ayden’s stops for now. He endured 4 surgeries before he was 6 months old, but has been surgery free for nearly 6 ½ years. I KNOW that there is virtually a ticking time bomb in his head, but a girl can dream can’t she?

We are extremely lucky, however, in that Ayden is nearly unscathed by any of his diagnoses. He has very minor balance, coordination, and left sided weakness issues, only discernible by a physical therapist. We are watching what may develop into a learning disability, but we won’t know until he’s older. He is all in all a happy, healthy, thriving almost 7-year-old boy, whose larger than life personality inspires us every day.

My husband, Anthony, and I decided to join the Pediatric Hydrocephalus Foundation for a few reasons. We found in the beginning that most of what very little our families knew of hydrocephalus was the results of complete ignorance. We hope to raise awareness of this all too common condition. We were astounded to learn how little has been done to improve the treatment of hydrocephalus. We hope to raise LOTS of money to go towards research! Last but definitely not least, we realize that no matter how compassionate, accomplished, and/or generally fantastic our children’s doctors and therapists are, they are not (in most cases) parents or grandparents or siblings to these miracles. We hope to be friends to and offer support to other families dealing with hydrocephalus. We feel incredibly lucky to have found this organization and become a part of it!

Ashley Jenkins – Missouri State Directors

Our youngest daughter, Faith, has congenital hydrocephalus caused by aqueductal stenosis. We learned of her condition at our 20 week ultrasound. The rest of my pregnancy was the scariest, most overwhelming time of my life. It seemed as though every doctor appointment we left with more bad news, and more gloom and doom scenarios. Faith was born at 38 weeks, and had her first shunt placed less than 24 hours later. We were still in the NICU 2 weeks later when she had her first revision for overdraining.

At 19 days old we were able to take her home, just to turn back around less than a month later with a shunt infection and another 15 day hospital stay. Thankfully, the shunt that was placed after the infection is still doing well, and my sweet girl has not had a brain surgery in 18 months.

Faith is now 21 months old and in numerous therapies, including physical, occupational, aqua, and speech. While behind in both gross and fine motor skills, she works hard and is slowly catching up on her milestones. Life has not been easy for her at times, but she is the happiest, most joyful little girl that I have ever known.

I became involved with the Pediatric Hydrocephalus Foundation because more than anything in this world I want a cure for hydrocephalus. I don’t want to have to worry every day that this may be the day my daughter’s shunt fails. I know one day we will find a cure, and I want to be part of an organization that contributed to the research that finds it.

I also want to spread awareness for hydrocephalus, which is so lacking. I will share our journey with anyone who will listen, and show that even though this diagnosis is not always easy, it’s absolutely worth it.

Brittni Lents & Stephen Lents – Nevada State Directors

We are the proud parents of two boys, a four year old named Jett and a two year old named Cruz. Cruz was diagnosed with hydrocephalus when he was one month old. While taking him into the pediatrician’s office for a routine weight check, we mentioned that we had noticed that his head appeared larger, and that he was falling asleep often. We were assured that he was still adjusting, and that newborns are sleepy.

We also mentioned to our pediatrician that our baby’s eyes were doing odd things, like hanging out at the bottom near his lower lids. We now know that this is called sun-setting eyes, and our doctor decided to measure his head. His circumference had increased significantly since his two week checkup, and we were sent for an ultrasound that proved that Cruz had excess fluid in his ventricles. We were then sent for a CT scan to obtain better images, and were told that he indeed had hydrocephalus and would need to be air lifted to Oakland Children’s Hospital for emergency brain surgery.

We remember thinking, how can this be happening? Why didn’t they catch it on an ultrasound? Why our son? So many questions go through your head; neither one of us had ever heard of hydrocephalus, nor had we any idea what that diagnosis meant for our child. Cruz’s first surgery was a failed ETV, and a few days later he had his first shunt placed. I remember unwrapping the bandages and crying.

Seeing the scar made it so real. We cried and cried. Thankfully we had a wonderful neurosurgeon that answered all of our questions and assured us that Cruz would be fine. His quiet calm helped us during those early days. We asked him anything and everything, and we felt that our son wasn’t just another patient to him.

As of February 2015, when we joined the Pediatric Hydrocephalus Foundation, Cruz has had a total of 3 surgeries. He is doing well, but there is always the fear that the flu or anything else could be a shunt malfunction.

When we found the Pediatric Hydrocephalus Foundation, we knew we wanted to be a part of such an amazing organization. When we received our child’s diagnosis, we felt alone and just wanted to have someone to talk to who had been through what we had. We want to offer support to other families who have to deal with hydrocephalus, so they would never feel alone.

Just having a friend or someone to call on who knew what we were going through and confide our fears would have changed those early days. Raising awareness about this disease and building a network of support in our area is a huge goal we hope to accomplish, as well. For the next families that find out a diagnosis of hydrocephalus, we hope that our family will be a helpful resource to the unexpected questions and concerns that they will undoubtedly have.

And finally, we want to help fund a CURE for hydrocephalus, because there has to be a better way. Fifty percent of all shunts fail within the first year, and that is just not good enough for our children.

Sarah Odegard – North Dakota State Chapter Director

My husband, Jason, and I welcomed our first daughter, Ashlyn, to the world in July of 2014. And we completed our family in August, 2019 with the addition of Kaia. She truly is a blessing. Both of our daughters are. And although everything seemed Facebook perfect, we were battling a fear like no other. Having a child born with a brain disorder. We learned at one day old that Kaia had severe ventriculomegaly with hydrocephalus and our perfect little family bubble popped. We handed our 10 day old baby over to a pediatric neurosurgeon and asked him to save her life.

And with the placement of a vp shunt, he did. Thank God for modern medicine, the Mayo Clinic and Dr. Edward Ahn! Many worries, hundreds of internet searches, several trips to Rochester, and lots of praying…I’m happy to say Kaia is thriving! With every toothless smile, every milestone reached and every prayer answered, we breathe a little easier each day. That’s not to say we don’t worry about nearly everything being a complication of her condition or a shunt occlusion, but it finally feels like our precious little girl is going to be ok.

There’s nothing as scary as being a helpless parent, so I’m putting my efforts to something I can do….advocate. I reached out to the Pediatric Hydrocephalus Foundation and happily accepted the position of North Dakota State Chapter Director. I hope to be a resource to parents with children diagnosed with hydrocephalus, educate & create awareness and help the mission to fund a CURE so no other children have to suffer the horrible effects of this disorder!

Madonna Logue – Southern NJ/Philadelphia State Director

My name is Madonna Logue Bove and my son Brody has hydrocephalus. My husband Keith and I welcomed our son into this world in July of 2010. I had an uncomplicated pregnancy and Brody seemed very healthy until he was about 18 months old. It started with flu like symptoms, but when Brody began having trouble walking and his eyes looked as if they were bulging, we went straight to the hospital. He was treated for dehydration, but when fluids weren’t perking him up we called a relative who worked at the hospital and had her take a look at him. This relative coincidentally has a daughter who has been living with hydrocephalus for 26 years. She examined him and immediately called Brody’s doctor and suggested a CT scan.

By the time Brody was diagnosed with hydrocephalus, his brain pressure was at a dangerous level and the nearest hospital with a pediatric neurosurgeon was almost 2 hours away. Helicopter was not an option and the doctors feared that he may not have survived the drive. By the grace of God, Brody’s doctor was able to find an adult neurosurgeon willing to perform surgery on him in Atlantic City; they had him there in 20 minutes. Brody then had his first surgery which was to insert an external catheter to relieve the pressure on his brain. After Brody was stable, they transported him to Philadelphia where he was shunted 2 days later. He has had one revision due to infection and one other related surgery since then. Brody is now almost 2 years old and is beginning to act like himself again.

When the members of our community learned that Brody had been diagnosed with hydrocephalus, there were an abundance of people who reached out to us, but hardly any of them knew what hydrocephalus was. There is an extreme lack of awareness and my goal is to increase knowledge and raise money to help fund a cure for this lifelong condition. Also, I hope to be able to provide support and hope to parents and families dealing with similar situations.

Madalyn Russek – Texas Director

Howdy y’all! My name is Madalyn Russek. I was born on February 20, 1993 as a healthy and happy baby in Nassau Bay, near Houston, Texas. At 5-1/2 weeks old, my mom took me to the pediatrician because I was inconsolably fussy. When the doctor measured my head, it was above the 100 percentile. After a CT scan and a meeting with a neurosurgeon at the Texas Medical Center, it was confirmed that I had Hydrocephalus caused by aqueductal stenosis. That same day, I had emergency surgery for a VP shunt placement. While the surgery was successful, my parents didn’t know if I would survive. We are very thankful to live so close to a world-renown medical center with great physicians, nurses, technicians and facilities. Shortly after surgery, my mom called a support group but received only grim news. Back in the 1990s there wasn’t any such support since there was very little information about Hydrocephalus.

By the time I was 8, I understood the gist of the condition. The paranoia of my shunt getting hit persisted all throughout my childhood, making it hard to be a kid at times. Because I knew I was different, there were times I felt like an alien. Despite this challenge, I started figure skating at 13. At 16, I developed a complication caused by my catheter grinding against my collar bone. I was also diagnosed with a mid brain glioma. Years later, I found out that the glioma may not be a tumor, however, it may have caused my Hydrocephalus.

I graduated from high school as salutatorian in 2011. While I was away at college during my sophomore year in Nacogdoches, Texas, three hours from Houston, the unthinkable happened – my catheter dislodged from my abdominal cavity and had to be rushed home to have emergency surgery in September 2012. After two and a half weeks, the catheter dislodged from my abdominal cavity again, requiring a second emergency surgery. I had to stay home for an entire semester to recover from the two surgeries. After 5-1/2 years, I received my Bachelor Degree in Creative Writing from Stephen F. Austin State University in 2016. To date, I have had a total of 10 surgeries as a result of my Hydrocephalus and was diagnosed with Post Traumatic Stress Disorder (PTSD) in 2019. I celebrated my seventh “Shuntiversary” (7 years since my last surgery) this past week.

My hope is that I can be a voice of reassurance and a resource for parents of children who have Hydrocephalus, for other young adults with Hydrocephalus, and serve as an advocate on the Local, State, and Federal levels for Hydrocephalus. I am just one of the many “Hydro Heroes” across our country, as we strive to promote funding for research to cure Hydrocephalus once and for all!

Kandice Curtis & Matt Curtis – Washington State Directors

Our oldest son, Weston, was diagnosed with Hydrocephalus when he was two years old. It all happened so suddenly, with no warning signs. He woke up one morning with a fever, very lethargic and complaining his head hurt. We lived in a small town in south Texas at the time and the hospital didn’t have the capabilities to determine what was wrong with him, so he was airlifted to the nearest children’s hospital three hours away in San Antonio. There he was diagnosed with Hydrocephalus caused by an arachnoid cyst and a VP shunt was placed to drain the cyst. It was terrifying, having a perfectly healthy child one moment then rushing him in for brain surgery the next.

Never having heard of Hydrocephalus, and barely being able to pronounce it, we felt clueless and uninformed about this condition our son was going to have for the rest of his life. Looking for answers, and hoping to find others going through similar situations, we came across the PHF. This organization, and the people within it, inspired us to do more and do our part in finding a cure.

Since the surgery we’ve moved to Washington state to be closer to our family and a Children’s hospital. We are very happy to be back home in the Northwest and can’t wait to start raising awareness for Hydrocephalus and raising money to find a cure!