11-Year-Old from Rossville, Michigan Aiden Smith Selected as 2023 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

Roseville, MI- Just 11 years old and already a four-time brain surgery survivor, Aiden developed an incurable brain condition known has Hydrocephalus, which is the number one cause of pediatric brain surgery, which is the only treatment option.

Aiden is a former 28-weeker, and a twin. He was born 9/26/2011 in Detroit. He spent 4 months in the NICU at the hospital he was born at and then was transferred out to Mott Children’s Hospital at the University of Michigan where he was for another 3 months before coming home for the first time a day before he turned 7 months. Unfortunately, Aiden’s twin sister Elise was stillborn, and his older sister Amelia also passed away, she was 23.6 weeks. Due to the prematurity, Aiden was resuscitated at birth which was what started his medical journey. Due to being resuscitated, Aiden developed epilepsy, cerebral palsy and hydrocephalus.

Aiden was selected as one of two children to serve as this year’s “National Ambassador of Hydrocephalus Awareness”, for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States. Aiden will represent the boys, while 2-year-old Annalise Strasel, also from Michigan, will represent the girls.

Aiden enjoys music, swinging, swimming, biking, going for walks. He has been to a Detroit Lions pre-season game, Detroit Pistons games, Disney on Ice, Sesame Street Live, University of Michigan football and a couple Detroit Tigers games.

Aiden’s Mom Andrea shared her thoughts about her son being named the National Ambassador of Awareness for the Hydrocephalus Community; “This is a great honor as many do not know about hydrocephalus and it allows us to bring awareness and share Aiden’s journey. As with many other medical conditions, others think it defines a person, but it doesn’t. It is part of them and is part of who they are today.”

2-Year-Old from St. Charles, Michigan Annalise Strasel Selected as 2023 National Ambassador of Hydrocephalus Awareness for Incurable Brain Condition

St. Charles, MI- Annalise just turned two on January 6th, her age now matching the amount of life-saving brain surgeries Annalise has survived. Annalise was born with Hydrocephalus, an incurable brain condition, the number one cause of pediatric brain surgery, which is the only treatment option.

Annalise was diagnosed in-utero and had her first brain surgery at just a couple of days old to place a shunt in her brain, a medical device that helps move and drain the excess cerebral spinal fluid from the brain. Because of an infection soon after, Annalise had her second brain surgery, where the first shunt system was replaced with another. The shunt has one of the highest failure rates of any medical device.

Annalise was selected as one of two children to serve as this year’s “National Ambassador of Hydrocephalus Awareness”, for the Pediatric Hydrocephalus Foundation, to help raise the level of awareness and education about Hydrocephalus in the United States. Annalise, whose family lives in St. Charles, Michigan, will represent the girls, while 11-year-old Aiden Smith, also from Michigan, will represent the boys.

Annalise enjoys being read books. She loves anything electronic. She loves video calling family and playing with Fisher Price Little People. Last summer she was able to ride her “neigh” as she calls him for occupational therapy. She adores any animal, but mainly horses and dogs.

Annalise’s Mom Nicole shared her thoughts about her daughter being named the National Ambassador of Awareness for the Hydrocephalus Community; ” It is an absolute honor for Annalise to be chosen. We are so excited for this opportunity.

As Annalise’s mom, I am always advocating for her and her condition with hydrocephalus. Our hopes are to raise awareness for hydrocephalus as we didn’t know the condition existed until Annalise was diagnosed.”

PHF Michigan State Chapter Co-Director’s Jason & Carmen Adams and Donna West are featured in the September Issue of The Altum Advocate

The PHF’s Michael Illions, Vice-President & Director of Advocacy, & Jason Adams, PHF Michigan State CO-Director, attended the Rare Disease Lobby Day & Conference last week in Washington DC.

Michael met with staffers from Senator Robert Menendez & Congressman Rush Holt’s office, and personally with Congressman Leonard Lance, while Jason met with staffers from Congressman Mike Rogers, Congresswoman Candice Miller & Senator Carl Levin’s office.

When presented with an opportunity to write about her favorite hero in a State-wide 8th grade school essay contest, 13 year old Hanna Adams didn’t need to look any further then her own 4 year old cousin Hawke Adams, who has had 11 Hydrocephalus related brain surgeries, as her “Personal Michigan Hero”.

Hanna’s essay was one of the top 3 chosen in her school, then named the overall winner, and now goes on to the State Finals!

And now to the story!!:

By Hanna Adams

When you hear the word hero, I bet you think of a guy with a cape on in a comic book or on TV? I did until my little cousin Hawke was born on May 14th, 2008. Hawke and his twin brother Jaxon were first pronounced dead at birth. Doctors had to make many resuscitation attempts to revive both boys. Finally after twelve long minutes, Hawke took his first breath! Sadly Jaxon did not survive.

During the resuscitation attempts, a hemorrhage formed in Hawke’s brain causing Hydrocephalus. Hydrocephalus is a rare condition where there is an excessive amount of fluid that builds up in the brain. Doctors, then figured out they had needed to place a shunt in his head, to help drain the excess fluid that builds up in his brain. Unfortunately for Hawke, this would not be the only surgery he would have to have done. He has had a total of fourteen brain surgeries due to shunt failure.

Hawke has spent two of his four birthdays in the hospital, within these four years Hawke has had to go through a lot, not only all the surgeries on his head but he has had to get corrective eye surgery done twice. He also has to go to therapy for his motor skills. Hawke wears braces on his legs and has to use a special walker to help him get around.

Amazingly enough, I have to say that I have never seen such a courageous boy! He comes out of all the surgeries and everything else that he continuously has to go through and yet every time he has a smile on his face! I remember just recently I had to get my tonsils out and I was really scared, and all I could think about was how scared he must have been, I believe that just thinking of him helped me not to be so scared of the surgery.

When I look at my little cousin I see such a strong brave boy. Hawke is a very Kind, Sweet, Spectacular little boy! And he definitely puts up a good fight. Hawke may have some challenges but don’t let that fool you cause he is bound and determined to prove all the doctors wrong. He loves playing with his baby brother, Canyon, and his older sisters, Alani and Jacie. He has an amazing spirit and is simply an inspiration to all.