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6-Year-Old Alabamian Lillian Alberts Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
January 10, 2022 by PHF
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6-Year-Old Alabamian Lillian Alberts Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition
Lily was born July 14, 2015 with her twin brother James. Her parents received the news at their anatomy scan that not only did Lily’s twin have Spina bifida, but both twins had congenital hydrocephalus. At three days old, she along with her brother received their first VP shunt placement. At ten days old Lillian got to come home with her brother and begin learning and growing. There was a slight bump in the road at seven weeks old, when Lily had her first shunt malfunction, which ended up being a 20 day hospital stay with two infections and four surgeries.
Thankfully Lily has had no issues with her shunt since! She has overcome much, including being diagnosed with epilepsy and dealing with some physical challenges. Yet through the help of the Drs and specialists at Children’s of Alabama, Early Intervention, Therapists, teachers, friends, and family, Lily has thrived and become an energetic, fun loving 1st grader.
Lillian, who is called Lily, loves reading. She tries reading everything she can, from books to road signs. She is a true Disney fan, and enjoyed a Wish Trip granted by Magic Moments of Alabama to Disney World shortly before the Covid shut down. She was able to meet her favorite Characters, Rapunzel and Flynn Ryder. Currently you can find her singing to the music of Encanto at the top of her lungs in her room. She also loves watching football with her family and cheering on her favorite team, the Alabama Crimson Tide!
Tennessee boy suffering from incurable brain condition selected as national ambassador
January 17, 2020 by PHF
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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
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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
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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.
2020: National Ambassadors of Hydrocephalus Awareness
November 9, 2019 by PHF
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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:
