3-Year-Old Kaylie Mae Lingor From Texas Selected as 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Kaylie Mae was born April 15th 2016. Our sweet Kaylie had a fast-paced entry into this world. When we were 20 weeks pregnant with Kaylie, she was diagnosed with Myelomeningocele Spina Bifida as well as Hydrocephalus.

The day she was born she had surgery to close her back and since the amount of fluid on her brain was substantial, she had to have a shunt immediately placed. During her 9 weeks in the NICU, Kaylie had quite a fight. A couple weeks into healing she had her first shunt malfunction, then two weeks following that surgery she had another shunt malfunction.

A few days after the second malfunction, she was diagnosed with meningitis and was rushed back into surgery and had an external shunt placed. After about a week with an external shunt she went back into surgery to have another internal shunt placed. The shunt had to be placed on the left side due to how many surgeries she had on the right side of her head so that she could heal properly.

Finally,12 days after that was placed, at 2 months old, we finally got to take our baby girl home.

Three months after she was discharged, she did have another revision. She has stayed our strong happy sweet girl through everything she has gone through so far in her almost 4 years of life.

Since that revision she has not needed another revision and we hope she does not need one for a long time. Since October 2016 Kaylie has had 7 more surgeries for various things from tubes for her ears, surgery on her feet and back to a major Cranio reconstruction (due to being diagnosed with Craniosynostosis).

Kaylie is so very outgoing and does not know a stranger! She is the sweetest little girl and little sister. She is our hero and inspires us everyday. We are so thankful and honored she choose us as her parents.

8-Year-Old Jaden Stallbories From Tennessee Selected as 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Jaden was born January 21, 2011. Unfortunately, labor was difficult, and he endured some complications.

Jaden was diagnosed with Hydrocephalus in 2014 at 3 years old. He would get very sick, it seemed like he was vomiting almost every single night and sleeping most of the day. We were consistently being told that it was “just a virus” and that he was fine. June 30, 2014, Jaden went in for a brain MRI for his genetic testing workup, but we were not expecting anything to actually be wrong with his brain.

We got a call 2 days later from the neurology team, informing us that Jaden has Hydrocephalus and needed to have brain surgery as soon as possible. In August of 2014, he had his first shunt placed. Since then, Jaden has had 3 additional brain surgeries, and many more hospital stays.

Jaden’s most recent surgery was August of 2018, when he received his new shunt. We are keeping our fingers crossed that this one lasts much longer than the last, and hopefully we can stay out of the OR for a while!

The PHF is looking for one boy and one girl to serve as our National Spokesperson for our 2020 National Hydrocephalus Awareness Campaign.

Our two National Ambassadors will be featured in marketing and promotional materials all through the year ending in September 2020 with National Hydrocephalus Awareness Month & our National Conference in Washington DC.

The National Ambassadors & their families will also receive a two night complimentary stay @ the Embassy Suites Hotel for the 2020 PHF Issues & Action Hydrocephalus Conference in Washington, DC on Thursday August 20th & Friday August 21st.

We will select 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).
NOTE: 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.

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

3B) Past winners are NOT eligible to participate.

4) All entries will be featured on the PHF website & Facebook.

5) IMPORTANT: Please participate in this campaign only if you are able to commit to attending the PHF’s National Hydrocephalus Conference in Washington, DC in August if your entry wins.

TO ENTER:

Contest ends 12/31 & both winners will be announced on Thursday, January 2nd, 2020 in the evening via video announcement.

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

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

EASTHAMPTON, Mass. (WWLP) – 21-year-old Westhampton resident Isabella Sacharcyzk has been struggling with the rare brain condition, Hydrocephalus, her entire life.

“Hydro” is a condition in which fluid accumulates in the brain, and sometimes causes brain damage. Isabella has had 22 brain surgeries. Hydro has affected her ability to walk and learn.

“I struggle with headaches everyday,” said Isabella Sacharczyk. “My ability to walk has gone up and down, I now wear leg braces.”

Isabella is the Director of the Massachusetts Chapter for the Pediatric Hydrocephalus Foundation. Her organization held the Walk and 5K Saturday outside the Mary Ann’s Dance Studio on Main Street.

This was the fifth “walk to beat hydrocephalus” in Easthampon and the main goal was to raise awareness and money to find better treatment and hopefully a cure.

“We look around we don’t know who is affected,” Michelle Walden of Deerfield. “There needs to be more awareness, more funding.”

“Last night I couldn’t sleep, just because I was so excited and I love seeing the community come together helping to create a common goal to eventually finding a cure to hydrocephalus, said Sacharczyk.”

All of the money raised will help fund hydrocephalus research at the Boston Children’s Hospital. More than 15 thousand dollars was raised at last year’s walk and 5K.

Source:

Quinnipiac student awarded scholarship named for Fairfield girl with incurable brain condition

FAIRFIELD — A Quinnipiac University student recently received a $30,000 scholarship named in honor of a Fairfield 6-year-old with an incurable brain condition, according to a news release.

The Pediatric Hydrocephalus Foundation, the largest pediatric-focused hydrocephalus advocacy and research funding provider in the country, announced on Monday that Ashley Dunbar, of Quinnipiac’s Frank H. Netter MD School of Medicine, was the first recipient of the Reagan Sloane Shanley Scholarship.

The scholarship is named for 6-year-old Fairfield resident Reagan Shanley. At 9-months-old, she was diagnosed with hydrocephalus and had two brain surgeries before she reached 18 months.

“Our brave and feisty little girl has inspired us to be a part of the Pediatric Hydrocephalus Foundation,” said a prepared statement from Cindy Shanley, mother of Reagan. Over the last 4 years we’ve raised almost $300,000 for the PHF through the generous donations of family and friends.”

Cindy Shanley said her family decided to created the scholarship in his daughter’s name as an effort to support students and researchers working to find advancements in treated hydrocephalus.

The scholarship Dunbar was awarded will be spread out over three years. She received three $10,000 checks to be used each year. The family said she was “the obvious choice” for the scholarship.

Dunbar was playing against the Yale University’s women’s ice hockey team in a game in the fall of 2013 when she was hit hard from behind and suffered a serious head injury, bringing her hockey career to an end, the news release said.

After her injury, Dunbar created a concussion support group at Quinnipiac and decided to focus on neurological research to understand how the body and brain function, and help support the fight against hydrocephalus.

“Reagan is truly a vivacious individual,” Dunbar said in a prepared statement. “Thank you again to the Shanley family and to the Pediatric Hydrocephalus Foundation for their support and I am honored to have been named a Reagan Sloane Shanley Scholarship recipient.”

Reagan’s parents, Tim and Cindy Shanley, are the Connecticut State Chapter Directors of the Pediatric Hydrocephalus Foundation. They said the continue to remain optimistic that their daughter’s condition will continue to be managed through her current health procedures.

Pediatric Hydrocephalus Foundation is an all-volunteer nonprofit organization intended to educate the community by raising awareness about hydrocephalus. The organization has 30 state chapters and provides support to families, friends and children affected by the incurable brain condition.

Source:

« Previous Page — Next Page »