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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8-Year-Old Brooklynn Reiter From South Carolina Selected as 2019 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

First time we ever heard the word hydrocephalus was when I was 20+ weeks pregnant at a ultrasound. She was born on 12-31-10 and had her first ETV surgery at 4 days old.

After about a month she was back in surgery for another ETV attempt due to the first one closing. A month later she was in surgery again to place a shunt.

She has had 4 shunt revisions since then. The latest being just this past November 4th, you can find a more in depth post about that on my Facebook page.

Brooklynn has also had surgery to correct the nerves behind her eyes due to the pressure. So, she has had a total of 8 surgeries due to hydrocephalus.

She was also diagnosed with IS as a baby but has since been seizure free.

5-Year-Old Caleb Wiggs From Kansas Selected as 2019 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Caleb came into this world at 25 weeks gestation, weighing 1lb 8oz and only 11 inches long. He spent the first 5 months of his little life in NICU. With many doctor visits and a lot of respiratory issues, Caleb spent a lot of time in the hospital. In October 2015 (20 months old) We were at our routine visit with his neurologist, when Dr. Christopher Smyser, St. Louis Children’s Hospital, looking at his chart noticed that his head had grown 4cm in 4 months.

He asked us to go to the Neurosurgery clinic and Dr. Limbrick would clarify what was going on. When talking to Dr. Limbrick he told us that Caleb had hydrocephalus and needed to have surgery as soon as possible. As a mom and dad of 4 other very healthy children this was some of the scariest news we could have been told. 18 days later we went in for his first brain surgery. On October 19th, Caleb had an ETV, (Endoscopic Third Ventriculostomy), put in.

Everything was going great! On November 14th, Caleb had a 35 min long seizure and was life flighted to Children’s hospital, where he was intubated and sedated for 3 days and what put on an EVD, (External Ventricular Drain), until he showed no sign of infection. After no infection he had his first VP shunt put into place. This was such a blessing! Our little man spoke some of his first words while being in the hospital. On Christmas day, Caleb started running a fever.

While corresponding back and forth with his neuro-team, he had frequent visits to the hospital but we were told that he had 2 viruses which are like common colds and the fever was related to that. After roughly a month of being in and out of the hospital and a lot of antibiotics. The fever was still coming back. The team decided to tap into the shunt and test the spinal fluid. He had a critical infection and we were admitted back into the hospital.

They removed the shunt and he had another EVD placed again for several days until he was infection free for 48 hours. Then placed another shunt in February 2016. We have been so blessed to of made it almost 3 years and no shunt revisions. In the coming weeks we are facing another surgery, because Caleb has started building fluid up on his brain.

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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The PHF is looking for one boy and one girl to serve as our National Spokesperson for our 2019 National Hydrocephalus Awareness Campaign.

These 2 National Ambassasors will be featured in marketing and promotional materials all through the year ending in September 2019 with National Hydrocephalus Awareness Month, (The winners in 2018 received a letter from their Member of Congress and mentioned on the Floor of the House of Representative and entered into the Congressional Record).

The National Ambassadors & their families will also receive a 2 night complimentary stay @ the Embassy Suites Hotel for the 2019 PHF Issues & Action Hydrocephalus Conference on Capitol Hill in Washington. DC on Thursday August 15th & Friday August 16th.

We will randomly selection ONE boy and ONE girl from all entries received. Read the rules carefully!

1) Submit one picture of your nominee*, between the ages of newborn to 19 years old, with their name, D.O.B., and location. *(By submitting a picture, you authorize the PHF to use the picture for promotional purposes).
** Failure to comply with Rule #1 will disqualify that entry.

2) Only one entry per child will be accepted. Siblings with Hydrocephalus can be entered separately.

3) ** PHF Board of Directors & State Chapter Directors are eligible to participate and enter their child.

4) All entries will be featured on the PHF website in a pictorial collage.

EMAIL your entries to mike@hydrocephaluskids.org (Entries sent any other way will NOT be accepted or acknowledged).

Contest ends 12/31 & both winners will be announced on January 2nd, 2019 in the evening via video announcement.

Check out the picture galleries of everyone who has been entered: