Read more at: https://html.com/attributes/img-width/>
Join Hydro Warriors for annual fundraiser
September 7, 2020 by PHF
Filed under Uncategorized
Comments Off on Join Hydro Warriors for annual fundraiser
The annual fundraising walk to help Hydro Warriors like Clara Shanks will take place next week in Sandusky.
Although the Fourth Annual Hydrocephalus Warrior Walk on Saturday, Sept. 12 will have a different look this year, because of COVID-19, the purpose remains the same: raising money to find a cure for hydrocephalus.
The venue for the “Walk a Mile” event, which last year raised more than $25,000, is the Sandusky High School track. However, organizer Heather Shanks, of Carsonville, said the venue could change but she won’t know if that happens until next Sept. 7.
Heather is Clara’s mom. She’s also a director for Michigan Pediatric Hydrocephalus Foundation.
The money raised at the event will go to the foundation for education and research grants to find better treatment, and a cure, for hydrocephalus, a life-long condition that requires surgery to remove a build-up of fluid on the brain.
More than one million Americans, from newborns to seniors are affected by the condition.
Clara, who is four years old, was born with hydrocephalus.
“This event fuels our passion for a cure for hydrocephalus,” said Shanks, a teacher at Croswell-Lexington Schools.
“The support we, and the many Hydrocephalus Warriors that attend, receive is unparalleled. Each year we are reminded that…we are remembered, prayed and cared for. We look forward to spreading awareness and funds each year.”
Registration is from 9:15-9:45 a.m. and the official start time for the walk is 10 a.m.
However, this is an open house-style event, so can you come anytime until noon to take part.
“In order to mitigate the number of individuals walking (at any one time), we’re hoping people can come any time between 10 and noon to walk their mile with us,” said Shanks.
The original plans called for carnival games, face painting and a bake sale, but they’ve been eliminated due to COVID-19.
But there will be music provided by the Sandusky Arts Council, and a serve yourself concession stand stocked with food that is individually wrapped and donated by Gordon Food Services, Sysco, Marz, and Bob and Jamie’s Grill.
The cost for the walk is $25. Children ages 12 and under are admitted free. Raffle tickets can be purchased, and if participants leave prior to the drawings they can pick up their prize at Bob and Jamie’s Grill.
For updates on the event, including a possible change in venue, check the Michigan Pediatric Hydrocephalus Foundation Facebook page and click on events.
Source:
Boy honored as ambassador of Hydrocephalus Awareness
September 5, 2020 by PHF
Filed under Uncategorized
Comments Off on Boy honored as ambassador of Hydrocephalus Awareness
Nine-year-old Jaden Stallbories has endured and survived more in his life than most people much older, with all the stitches, and now national accolades, to prove it.
Since the age of 3, Jaden has suffered from a condition called Hydrocephalus, a disease in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. It is a disease which affects approximately one of every 500 births. Due to lack of advancements in treatment, many are left unable to lead full and productive lives, and if left untreated can be fatal.
Described as a “warrior and champion,” Jaden has survived four life-threatening brain surgeries while fighting the incurable disease.
Jaden was recognized this week as part of the Spring Hill Board of Mayor and Aldermen’s August regular meeting, attending virtually through Zoom, where he was presented a proclamation by Mayor Rick Graham.
“Throughout years of treatment and surgeries, this brave warrior has continued to keep his sense of humor, his sweet disposition, a smile on his face and is always at the ready to cheer on his favorite hockey and football team,” the proclamation states.
“Jaden Stallbories, being recognized for his strength and courage has been chosen as the male, 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition, has brought this condition to the attention of the City of Spring Hill, Board of Mayor and Alderman; and I, Rick Graham, Mayor of Spring Hill, do hereby honor Jaden Stallbories for his determination, strength and inspiration while facing this tremendous challenge and proclaim the month of September as Hydrocephalus Awareness Month.”
Jaden is one of only two children selected to serve as the 2020 National Ambassador for Hydrocephalus Awareness by the Pediatric Hydrocephalus Foundation (PHF).
“If you look up the definition of survivor, there’s a good chance you would see a picture of Jaden featured,” the PHF released in a statement. “Everybody that has met Jaden will tell you all about his sense of humor, and how he is such a sweet little boy. Throughout everything that he has endured, he still smiles and laughs. He has never let anything dim his light, and that is why he is our hero.”
As an ambassador, Jaden has been featured in advertisement campaigns and promotional materials throughout the year, all in an effort to help raise the level of awareness and education about Hydrocephalus in the U.S. He and his family had just returned from Washington D.C. after attending the Pediatric Hydrocephalus F’s Annual Issues & Action Hydrocephalus Conference.
“The city is very proud of you and appreciate all you are doing for the cause, and we really appreciate this,” Graham said to Jaden and his mother, Carissa. “If we were all there live, Jaden, we’d all be standing up right now applauding. I don’t know how we could do that on video, but please understand we are.”
As Graham finished his remarks, all in attendance unmuted their mics and gave a rousing applause in Jaden’s honor.
“We are so grateful that Jaden was picked to be the 2020 Ambassador. It means so much to us to have the opportunity to be involved with the PHF, and to do this with Jaden,” Jaden’s parents released in a statement.
For more information about Hydrocephalus, visit www.hydrocephaluskids.org.
Source:
Tennessee boy suffering from incurable brain condition selected as national ambassador
January 17, 2020 by PHF
Filed under Uncategorized
Comments Off on Tennessee boy suffering from incurable brain condition selected as national ambassador
SPRING HILL, Tenn. (WZTV) — A Tennessee boy suffering from an incurable brain condition has been chosen as a 2020 National Ambassador of Hydrocephalus Awareness.
Hydrocephalus is a condition where excessive fluid gathers in the brain, widening spaces and placing potentially harmful pressure on brain tissues. According to the Pediatric Hydrocephalus Foundation, Hydrocephalus occurs in approximately one of every 500 births. Untreated, it could be fatal.
Jaden Stallbories of Spring Hill was diagnosed with the condition in 2014 at just 3 years old. He has survived four life threatening brain surgeries due to the fluid buildup in the brain.
“If you look up the definition of survivor, there’s a good chance you would see a picture of Jaden featured,” the Pediatric Hydrocephalus Foundation said. “Everybody that has met Jaden will tell you all about his sense of humor, and how he is such a sweet little boy. Throughout everything that he has endured, he still smiles and laughs. He has never let anything dim his light, and that is why he is our hero.”
The 8-year-old was selected as one of two children across the country to serve as this year’s 2020 National Ambassador of Hydrocephalus Awareness. Jaden will join 3-year-old Kaylie Mae Lingor of Texas in his ambassador role to spread awareness for the illness as well as be featured in a national advertising campaign.
Jaden seems excited to represent; “I am really happy to be a part of something that is for hydrocephalus.”
Jaden and his family will travel from Spring Hill to Washington, DC in August for the organization’s Annual Issues & Action Hydrocephalus Conference.
“We are so grateful that Jaden was picked to be the 2020 Ambassador. It means so much to us to have the opportunity to be involved with the PHF, and to do this with Jaden,” the child’s parents released in a statement.
For more information on the condition, click here.
Source:
3-Year-Old Kaylie Mae Lingor From Texas Selected as 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
January 8, 2020 by PHF
Filed under Uncategorized
Comments Off on 3-Year-Old Kaylie Mae Lingor From Texas Selected as 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
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.
No matter what this little girl endures she does it with style and is always happy!
8-Year-Old Jaden Stallbories From Tennessee Selected as 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
January 7, 2020 by PHF
Filed under Uncategorized
Comments Off on 8-Year-Old Jaden Stallbories From Tennessee Selected as 2020 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
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!
Everybody that has met Jaden will tell you all about his sense of humor, and how he is such a sweet little boy. Throughout everything that he has endured, he still smiles and laughs. He has never let anything dim his light, and that is why he is our hero.
