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Our kids inspire us to fight to defeat DIPG.

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Donation Total: $60.00 One Time

Because of Noah
Family Partner

October 21, 2010 – February 17, 2023

Diagnosed: January 30, 2022

Written by Noah’s family

Noah touched so many in a variety of ways.   He was an amazing kid: sweet, caring, smart, witty, funny and incredibly talented.

Noah was always inquisitive and what we would characterize as a “studier” taking it all in wherever he was. He was a bright student and was also well liked by his peers.   His time in elementary school was some of his happiest. He excelled at the curriculum, was a voracious reader, and managed to win Kid of Character several times over the course of his time there.

Noah not only loved school, but he also loved playing baseball and learning the piano.  He started both when he was 5 years old and as he matured, so did his skill level. Baseball was played at West Boynton Little League, and he started in Tee Ball.  Noah’s early coaches instilled a love for the game from the get-go and he never looked back. He moved through T-Ball, Coach Pitch, and then to Kid Pitch handling each transition well and adjusting to the new demands placed on him.  Noah was very fortunate to have some amazing coaches through the years.  Noah developed a special bond with his Minors coach, who he was able to play under for 5 seasons.  His last season while he underwent radiation therapy and the crippling effects of it.  The league always wanted to preserve Noah’s dignity and even made him team manager and gave him an honorary All-Stars Jersey.  Noah loved the game.  He loved getting a great hit and he loved playing different positions like Catcher and First Base. His true love was Pitcher.  Nothing would excite him more than being called to the mound.  It meant taking off his precious sleeve, but it was worth it to him.

If baseball was his favorite sport to play, then basketball was his favorite sport to watch.  Another Covid pastime was watching the NBA playoffs and finals while teams were in what was known as “the bubble”. This was Noah’s first introduction to his idol Jimmy Butler.  Jimmy’s amazing skills coupled with his cheeky personality got Noah’s attention and he looked forward each time to watching him play. When games resumed with fans, one of our first stops was a Heat game.  Noah followed Jimmy’s career and his achievements and admired him greatly.  When the time came for his make a wish decision he aimed higher than a three point basket from Mr. Buckets himself.  He asked to meet Jimmy and go to a playoffs game. Jimmy graciously agreed to meet Noah at the arena prior to the game and the rest is history.  We still talk about that day and how meaningful it was to meet several players including Jimmy and see the Heat clinch their first victory for the playoffs.

Noah was an accomplished piano player as well.  He played complicated pieces and had no fear performing them in front of an audience without the music present.  All done by memory.  He was getting ready to perform for the local school of the arts audition when his tumor was discovered and changed his plans.

During his last year in elementary school, we were given the devastating news that Noah had a brain tumor.  This particular diagnosis held no cure and grim statistics.  We knew our time was limited. Given the weight of this, we wanted him to experience a life with hope for the future.  We wanted him to have as many joy filled experiences as possible in order to counterbalance the challenges he has had to face at such a young age.  Pediatric cancer was never something we would have thought possible for our family.  We woke up each day grateful for this miracle and now we were being told that he would be taken away.

We were always so proud of Noah.  He amazed us that he had many varied interests and he succeeded at all of them. He was brave and would tackle any fear-inducing activity whether it be public speaking, taking a plunge in a fast-paced water slide, or riding an upside down roller coaster.  He was confident without being boastful and a great friend to all who knew him.  So incredibly bright that while undergoing radiation therapy and the after effects, he insisted on going to school.  We would try to argue against him going but he was determined “I am going”. We can still hear him.  Some of the effects of radiation were headaches, fatigue, nausea, vomiting, balance issues, double vision, and overall weakness on his right side.  While dealing with all those side effects he managed to score a 5 on all three FCATS.  He went onto middle school and his teachers there also recognized what a special young man he was. He went onto earn Honor Roll and attended his first school dance. We were and are still in awe of him.

Noah loved architecture and had big plans to build several modern style houses.  He wanted to attend an Ivy League University.  We are not even sure if he knew exactly what that meant but he knew it was special and if it was special, Noah was going to try and achieve it.  Our hearts ache for all the wonderful things he should have been able to accomplish.  Including his Bar Mitzvah.

During Covid, we watched the Marvel movies in order and became avid Marvel Universe fans.  We liked the romantic notion that there are alternate universes and that maybe there is one where Noah never had cancer and where he would have lived a long, full life – filled with his many accomplishments that we know were awaiting him.

Noah had a wonderful sense of style.  He loved a quarter zip and enjoyed his monthly stitch fix arrival. There wasn’t an accessory he didn’t love.   Arm sleeves, Apple Watch bands, leather jackets, aviator glasses, and several pairs of Nike sneakers to name a few.  He also was a big fan of the electronic gadget.  I sincerely hope that there’s an Apple Store in heaven because that’s probably the first place he would want to visit.

Noah had an eclectic music taste too.  Most children enjoy pop and contemporary hits, but our Noah had an affinity for Classic Rock and 80’s hair bands.  For his radiation treatments he was able to create his own playlist to listen to while having treatment.  We can still see the look of delight when the technicians would hear it for the first time.  “Foreigner, I love that song” or “AC/DC, this kids got taste”. As the weeks went on, they all looked forward to seeing him daily and hearing his music.  He loved Billy Joel and not only attended two concerts but also was fortunate to sit down and meet with him during a lunch at an Italian restaurant no less.  There were no bottles of red or white incase anyone was wondering.  Just a young boy with his music idol enjoying each others company.

Noah had a deep love for his family and adored his cousins. Family trips to Alaska and Disney were always an adventure. The bond that Noah had with his family was beautiful and touching to witness.  He was so easy to love, and his cousins returned that love ten-fold.

This past year we were able to give Noah some respite from treatments and the effects of this disease through several experiences.  Many people came together to help and support us, and we cannot even begin to convey how grateful we are as a family to have been able to take Noah on trips and sporting events and concerts. He traveled to Nantucket, NY, Orlando, and Blue Ridge. He saw the Dolphins beat the Bills, a couple Marlins games, Hockey games and of course Miami Heat games.  He swam with dolphins and rode on a Zamboni.  He relaxed in his own poolside cabana and made several trips to Capital Grille.  Most importantly, he was able to make memories with family and friends who love and adore him.

Noah developed a love for the band One Republic and we were able to go to their concert in September 2022  One of their songs is particularly poignant titled “I lived”. It became our own mantra for Noah.  It had special meaning because it’s about recognizing that yes life can be painful but that if you focus on the joy of living, it can be beautiful too.  We’ll leave you with the closing lyrics of the song:

I did it all

I did it all

I owned every second that this world could give

I saw so many places, the things that I did

With every broken bone I swear I lived

I swear I lived

You definitely lived buddy and we will miss you and love you for the rest of ours.

What is DIPG?

DIPG is a devastating and aggressive brain tumor typically found in children.

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