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.

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:

Brayden wanted to raise money for the Pediatric Hydrocephalus Foundation to be used for research. He and his younger brother, Ashton, decided to sell water from their driveway. A close family friend saw them and felt sorry for them so they came over with some lemonade mix to add to the water. All the neighbors from their small cul-de-sac stopped and bought some. The boys ended up raising $12. They were thrilled.

Well, the lemonade stand turned into a much bigger deal, thanks to the outpouring of support from the community. With the help of the Washingtonville Community Events Team, Betty’s Country Kitchen, J. Hoffman Insurance, and Hudson Heritage Realty, Brayden’s Lemonade stand debuted at the Aug. 24 Date Night at Vern Allen Park. Brayden sold his lemonade for a $1 a cup and many visitors told him to keep the change. He in turn let them come back for refills. Brayden raised just under $650. Both the water and the lemonade mix were donated.

The stand was so popular, Brayden was invited to set up again at the upcoming Witchingtonville 2018 event at Vern Allen Park on Oct., 20, where thousands are expected to attend. Looks like Brayden’s going to need a bigger stand!

If you would like to donate to Brayden’s cause, attend the Oct. 20 Witchingtonville 2018 event at Vern Allen Park in Washingtonville or if you cannot attend you can mail your donation to Brayden Thew, 9 McNamara Dr., Campbell Hall 10916.

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Despite undergoing seven brain surgeries, Brayden is an active youngster, said his mom, Cassandra.

“He loves basketball,” Cassandra said “He plays soccer. He’s a cub scout. We are very, very fortunate because we have friends who have kids with Hydrocephalus that have severe disabilities, whether it is they can’t walk, they can’t talk. It’s kind of like a crap shoot with Hydrocephalus. You don’t what you are going to get because you don’t know how much damage is going to be done neurologically.”

Brayden has put a face on the pediatric disease. He has also found a way to raise money for research.

He has raised $650 with a lemonade stand in front of his house. His effort debuted at the August 24th Date Night at Vern Allen Park with help from the Washingtonville Community Events Team and a number of local businesses.

His popular beverage stand has been invited back to the park for “Witchingtonville 2018” on Saturday, October 20.

Brayden has two brothers, Evan, 7, and Ashton, 5. Cassandra and Greg are expecting.  A little sister will join the family in January.

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