The PHF is looking for one boy and one girl to serve as our National Spokesperson for our 2023 National Hydrocephalus Awareness Campaign.

Our two National Ambassadors will be featured in marketing and promotional materials all through the new year, and especially during September 2023 for National Hydrocephalus Awareness Month.

We will select ONE boy and ONE girl from all entries received.

👉 Read these rules carefully!

⓵ 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.

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

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

⓸ Past winners are NOT eligible to participate.

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

TO ENTER:
EMAIL your entry to mike@hydrocephaluskids.org (Entries sent ANY other way will NOT be accepted or acknowledged).

Contest ends December 31st, 2022 & both winners will be announced on Monday, January 2nd, 2023 in the evening via LIVE video announcement.

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

STATEN ISLAND, N.Y. — When Micki Lee, 47, was pregnant with her second daughter, she learned at her 20 week sonogram appointment that her unborn child had hydrocephalus or fluid on her brain.

“I didn’t know what that meant at the time, so further testing was done. … I followed up with two other opinions, and they both came back saying she would need to be ‘shunted’ when she was born,” recalled Lee, an Arrochar resident.

Hydrocephalus is a condition in which abnormally widened cerebral spaces in the brain inhibit the normal flow of cerebrospinal fluid. The process of shunting involves inserting catheters to drain excess accumulation of cerebrospinal fluid from the brain’s ventricles.

“Thankfully, she had an amazing neurosurgeon, who watched her closely,” recalled Lee of her daughter’s first surgery at 7 months old.

Her daughter, Melody Thorne, has had four subsequent surgeries — including one in Jan. 2020 — to ease the pressure on her brain.

She is now 10 years old. And is determined to bring awareness to this rare disease.

“She is a strong girl and wants to spread awareness about hydrocephalus. She describes her condition by telling people, ‘My brain doesn’t work like yours so my doctor has to fix it sometimes,’” said Lee.

RAISING AWARENESS

Because there’s no cure for hydrocephalus, Lee has spent many years thinking of different ways to raise awareness of the disease.

Recently, Lee remembered she had a talent for candle-making. Some years ago Lee used to make homemade all-natural soy candles as gifts for family and friends — many of whom would offer to pay for more because they were so fond of her products.

For this reason, Lee created Solstice Media Corp., a homemade candle and wax melt business, in March 2022. A portion of the proceeds are donated to the Pediatric Hydrocephalus Foundation, a non-profit located in Woodbridge, N.J.

“I hand-make and pour all the candle wax melts that I sell. I use natural soy wax for the wax melts and liquid color and fragrance scent,” said Lee.

She hopes her contribution to the foundation will one day lead to a cure.

“By receiving donations, the Pediatric Hydrocephalus Foundation is able to send funds to find a cure, [and] a rhyme or a reason for why children are born with this disease. At this time, we do know that head injuries can cause hydrocephalus due to swelling, what we don’t know for sure, is in the womb what causes this condition,” she said.

ABOUT THE CANDLES

In addition to raising awareness, Lee sees the business venture as bonding experience with her daughter. And she makes sure her daughter is part of the creative process.

“My daughter, Melody, plays a big role in choosing what scents and shapes I make,” said Lee. “She’ll tell me what color and what scent to get. For example, I just made little Christmas trees just to see how they look, so I know how to package them. And I said to her, ‘What scent should I get?’ And she said, ‘Let’s do peach.’ So we made peach green Christmas trees.’”

Lee and her daughter create and make all-natural soy wax melts in various shapes and sizes.

“Shapes I currently have available are awareness ribbons, sugar cookies, mini muffin, small squares, large squares, clam shells and magic unicorn (Melody blessed the mold with magic powers so all wax melts made with it will be magic). The scents I currently have available are vanilla, strawberry, eucalyptus and cotton candy,” said Lee.

Popular items are “strawberry love jars,” which contain white, red and pink hearts, as well as small jars with the word “love” and hearts on them. There’s also light blue ribbon melts in jars for pediatric hydrocephalus awareness. Lee noted she can make customized awareness wax melt ribbons for any cause.

Lee said she will be adding natural soap made from oatmeal, shea butter and goats milk to the inventory in the coming weeks.

“My favorite part of the job is having my daughter assist with the creative side of the business. She really wants me to succeed and raise awareness for her condition,” said Lee.

WHERE TO BUY

Lee sells her products at Lo’Kel-Li Vendor Market in the Staten Island Mall, New Springville. And while there, she creates awareness about hydrocephalus. She also takes orders online.

UPCOMING AWARENESS EVENTS

Lee and her family — which also consists of her older daughter, Alexis, and husband, Clarence Thorne — try to raise awareness of hydrocephalus by taking part in local events. Lee will take part in the 14th annual Pediatric Hydrocephalus Foundation walk on Sept. 10, 2022 in Edison, N.J.

And on Sept. 17, Lee will be holding her first fundraising event — which she plans to continue annually — to raise money for the Pediatric Hydrocephalus Foundation.

“We will have music, raffles and live performances. If anyone would like to donate items for raffles or food for this event they can reach me at solsticemediacorp@gmail.com,” she said, noting the event will take place at the Swedish Football Club, 725 65th St. Brooklyn.

For more information on the condition, click here.

Source:

10-Year-Old Isaiah Donaldson Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

6-Year-Old Alabamian Lillian Alberts Selected as 2022 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

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!

2022: National Ambassadors of Hydrocephalus Awareness

The Boys
The Girls

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