By Congressman Roger Marshall

This week Caleb Wiggs from Leoti, Kansas celebrated his fifth birthday.

Caleb is grateful for many things this milestone, but perhaps one thing that many 5-year-olds overlook, he is grateful for his life. At the age of five, this condition has caused him to undergo three life-saving brain surgeries.

Caleb has been selected as one of the 2019 National Ambassador for Hydrocephalus Awareness for the Pediatric Hydrocephalus Foundation. As an ambassador, he will educate people across the country on this disease that so desperately needs medical advancements and treatment solutions. He will also participate in the 2019 Hydrocephalus Issues & Action Conference in Washington this August where he will meet with my fellow lawmakers.

Hydrocephalus can develop at the time of birth or later. As an obstetrician, I understand the severity of this condition from having to prepare new mothers for the challenges ahead and ensuring the best care for these newborns. Sadly, one to two of every 1,000 babies are born with hydrocephalus but there is hope. Robust medical research partnered with patient advocates like Caleb can bring new advancements to the finish line.

Caleb, your bravery and voice will have an impact on thousands of lives, including the many families fighting this condition.

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WESTHAMPTON, MA (WGGB/WSHM) — As a parent, one of the toughest thing you’d ever go through is hearing your child has a rare condition.

One Westhampton woman has used her diagnosis as a defining moment for the rest of her life.

“My parents, after I was born…were told I would never talk, walk, see, hear. They were advised to put me in a home. Thank God they didn’t,” said Isabella Sacharczyk.

Like many 20 year olds, Sacharczyk is in college studying for her future career, but she also has hydrocephalus.

“Hydrocephalus is water on the brain. It’s an incurable condition where the cerebral spinal fluid doesn’t drain. I have hydrocephalus,” Sacharczyk explained.

After her initial diagnosis, Sacharczyk has proven the doctors wrong each step of the way.

“I graduated from Hampshire Regional and am now in college. I’ve made it my mission in life to become a medical researcher to help find a cure for hydrocephalus,” Sacharczyk noted.

Sacharczyk is instrumental in the organization Pediatric Hydrocephalus Foundation, where she is co-director for the Massachusetts chapter.

One of the groups biggest events is a fundraising walk.

“This past walk, we raised a little over $5,000. We do a walk here and an event in New York. Combined, every year, we have been able to donate about $10,000 to Boston Children’s Hospital,” Sacharczyk said.

Many in Westhampton are supportive of her efforts.

“Outlook Farms is absolutely incredible. They are gracious enough to allow me to put a donation jar near their register. I picked up the jars right before the walk and we had $150 to add to the total we raised for the walk,” Sacharczyk added.

We wanted to help, so on behalf of Western Mass News and Diamond RV, Jacob presented Sacharczyk with a check for $500.

“Every dollar gets us closer to a cure. I feel that we are close,” Sacharczyk said.

CLICK HERE for more information on Sacharczyk’s mission and CLICK HERE to learn more about the Pediatric Hydrocephalus Foundation.

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WESTHAMPTON, Mass. (WWLP) – A courageous young Hampshire County woman is helping to find a cure to a brain condition that’s afflicted her since birth.

Bella Sacharczyk of Westhampton led her fourth fundraising walk for the Pediatric Hydrocephalus Foundation Saturday, on her 20th birthday.

Bella has undergone brain surgery 23 times since she was an infant to battle this incurable condition that has threatened her speech and ability to walk.

“I do this walk not for me probably won’t help me, but I’m doing it for the generation coming up,” Bella told 22News.

The money raised during Saturday’s walk will add to the thousands of dollars already donated to the Boston Children’s Hospital for Hydrocephalus research.

Bella is currently a biology student at Holyoke Community College. She plans on moving on to attend UMass.

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EASTHAMPTON, Mass. (WWLP) – One Hampshire County parent prays that one day science finds a cure to the disease that’s afflicted her daughter since birth.

Denise Sacharczyk of Westhampton organized a fundraiser Sunday at the American Legion Post 224 in Easthampton. Her daughter suffers from Hydrocephalus, or as it is more commonly called, “water on the brain.”

Sacharczyk told 22News, “My daughter has had 23 brain surgeries because of that. She lives with chronic pain, any day not being able to walk. A couple of times, she’s had surgeries and learned to walk all over again.”

Sacharczyk is active in the Pediatric Hydrocephalus Foundation on behalf of her daughter and other young people suffering from “water on the brain.”

It’s estimated that out of 1,000 newborns, two will be afflicted by this disabling condition.

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