KAYLEE RIVERS COURAGE AWARD

“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, `I will try again tomorrow'.”

- Mary Anne Radmacher

BACKGROUND

In 2010, we initiated the First Annual Kaylee Rivers Courage Award in loving memory of Courageous Kaylee Rivers. Kaylee was 5 yrs. old when she was diagnosed with Stage 4 Neuroblastoma. No amount of home cooked meals and no amount of fundraising by well meaning family/friends/neighbors/and even strangers could cure Kaylee. We can't begin to imagine what the Rivers family went through when Kaylee passed away and what they continue to experience as a result of having lost a child. While we are sure that Kaylee will never be forgotten by her family, it is our wish that the foundation can give the Rivers some measure of comfort in the knowledge that Kaylee's legacy lives on in the people that we have touched because of one little girl's courage. Kaylee's legacy exists in the faces of families we help, in the social workers who distribute needed items that we provide them with throughout the school district, in the many scholarships we provide helping to heal hearts and memorialize loved ones, and in the events we host that allow us to give hope to families battling illness.

First Kisses for Kaylee Dinner/Dance. Celebrating Kaylee/Emma’s birthday with a few hundred of their closest friends

BLAKELY MURPHY 2017

Blakely Murphy, a scholar athlete graduate of Smithtown East is now attending Adelphi University where she continues to strive for excellence in class and on the volleyball court! Her main focus aside from her education is on her advocacy work. But it was not always so crystal clear when she was a preteen that her future would be this bright. After conventional surgery for a brain tumor at age 11, she returned to her life until at 13, she was diagnosed with another brain tumor. Blakely and her mom, Dawn insisted they find a new surgical approach and she was introduced to Brainpath, a tool created to access the brain in a minimally invasive way. The hard part was that she would be awake for this 6+ hour surgery so they could determine if any speech or motor functions were being affected.

In April 2013, she underwent the surgery and returned to her club volleyball court after just 2 weeks. She is recognized as the first patient in the world who can compare conventional brain surgery with a procedure using Brainpath technology. Because Blakely didn’t want to be treated differently, she opted not to share her news of her surgery with her classmates, instead she wore a sling on her arm as the reason why she couldn’t attend any athletics. It is not surprising that this young lady is our recipient, as this apple doesn’t fall far from her tree. You see, her mother had to deal with a similar situation when she was 6 months pregnant as her 31 year old husband passed away from an aggressive brain cancer. So when Dawn’s 11 year old daughter had a brain tumor, she fulfilled her role as her daughter’s advocate admirably. Dawn said that when her daughter was first diagnosed, she at least felt capable of handling it, as she puts it, she knew the right questions to ask having gone through this already. And as a result, she plays a large part in who her daughter is today and Dawn deserves to be acknowledged as well.

At her high school, her volleyball coach, George Alamia said that “Blakely was amazing throughout her career playing volleyball at Smithtown. From middle school, you saw her passion to play the sport. What separated her from the rest was her work ethic and leadership. She helped lead our team to a County Championship. Her ability to overcome obstacles off the court and to lead on the court was something so unbelievable and truly speaks volumes of the person Blakely is. Blakely left her mark at Smithtown East and will continue to show everyone in her path that anything is possible if you have the passion and determination to achieve it.”

So the little girl who wore the sling to hide what was happening to her is now a nonpaid public advocate of Brainpath, talking about her experiences on Youtube and on TV. She has been a keynote speaker before congress, all in an effort to raise awareness & inspire others to have hope

KATHY ALBRECHT 2016

Rachel Eisenson of St. James was in dire need of a kidney transplant & as the family made their plea for a new kidney for their daughter through social media, Kathy knew when she read about Rachel, she knew she just to help. Having her own grown daughter have a medical scare a few years prior made her sympathize with the Eisenson's as she understood their helplessness & desperation as a parent. So she decided to get tested to see if her kidney was a match & as it turned out, it was! So in May of 2016, Rachel got her kidney from a total stranger who lived in the same community & whose kidney was a match!
I’m happy to report that Rachael has since completed her Masters degree from Touro College! As for Rachael’s donor, she writes in her column that she is extremely grateful for the opportunity to donor her kidney, can you imagine that, she calls it an “opportunity” Now just so you can understand just how selfless our recipient’s donation was, consider that in the US of the 17,107 kidney transplants that took place last year, 5,537 were from living donors & ONLY 108 of those were given to people who did NOT know the recipient!

The Eisenson family knows they owe a tremendous debt of gratitude to Kathleen. Charles Eisenson says if her were to write a book about Kathleen - he would call it “ALL IN” because from the very first day that their paths crossed, that has been her steadfast response to anyone who asked her about Rachel. Obviously, Kathleen Albrecht’s generous altruism in selflessly coming forward is worthy of the highest praise imaginable. Our entire family is in her debt, not only for saving our daughter’s life, but in a world that seems to be ripped apart by negativism and discord, Kathleen and people like her are the truly saving grace for humanity.

DYLAN BEACH, STEFANI FELBER & THEIR FAMILIES 2015

As we thought about our Courage Award recipient for this year, it struck us that September is Childhood Cancer Awareness month & we immediately thought of two children in the community battling brain tumors since they were just babies, Dylan Beach & Stefani Felber. It is only fitting that we present these two amazing young cancer survivors as well as their families who fight this fight with their kids each & every day our Kaylee Rivers 2015 Courage Award.
In 2008, at 9 months of age, Stefani Felber was diagnosed with a cancerous brain stem tumor that was inoperable & so she began many years & rounds of chemo/alternative treatments. In 2011, she was deemed cancer free but it was short lived as the tumor had returned. The family was told that as long as it did not grow, Stefani would not need chemo & 7 years later, the underlying presence of the tumor keeps Stefani getting scans regularly to monitor the tumor. In 2013, the SCF put together a 5K run to show community support for Stefani & her family to raise awareness of childhood cancer & brain tumors. It was the family’s hope that sharing their story gives others in similar situations, the hope & courage needed to get through their day. Today, Stefani is in 3rd grade, their little warrior princess enjoying what other kids enjoy soccer, gymnastics & playing with her siblings.
In 2008, Dylan was just 2 years old, when he had emergency surgery to remove a cancerous brain tumor, enduring 6 months of chemo & stem cell transplants. He was in remission for 3 years but a recurrent tumor was found & Dylan underwent another surgery, but returned to kindgergarten a week later. Dylan was in remission for another 19 months, when he underwent surgery along with another treatment. He continues to be monitored & has since undergone radiation & 2 more surgeries this past summer. In 2014, the SCF learned of Dylan’s story & joined forces with the Ondrush family to host a fundraiser attended by 400 of Dylan’s family, friends, neighbors, classmates & even strangers to show their support for this family’s courage. Dylan is currently in 4th grade & he enjoys playing lacrosse & hockey. He is a typical little boy except that he is a four time cancer survivor.

SEAN "SUPERMAN" COOK 2014

Sean "Superman" Cook 2014
In April 2011, then 15 yr old, Sean Cook was diagnosed with a rare form of Stage 4 Germ Cell Cancer. Sean was a typical teen, he loved bowling, and he was a member of the Smithtown Jr. Fire Explorers. In the months just prior to his passing, Sean celebrated his 18th birthday, graduated from SHS West, and officially became a firefighter. Sean's last surgery involved removing a rib & replacing it with titanium rod, aproppriate given his Superman nickname. Throughout all of Sean's treatments & surgeries, he never complained & he always had a smile on his face. Unfortunately, Sean lost his battle on August 23, 2013 but he will forever be remembered for his wonderful smile & his courage, In addition, a dear family friend, Dave Lewis, also a volunteer firefighter & an NYPD officer, Dave runs Camp HOPE for children & siblings with cancer. While Dave wanted Sean to attend this camp, Sean was never well enough to attend. As part of us honoring Sean, the SCF presented Dave with a check for $2500 for one week's camp in honor of our Courageous Sean Superman Cook.

THE SPECHT FAMILY 2013

Samantha & Richard Specht do not live in Smithtown but their impact on our children is great as both are teachers in the Smithtown School district. On 10/27/12, as we all rushed to batten down our hatches before Hurricane Sandy, the Spechts were no different but in the midst of this chaos, their 22 month old son drowned in their pond. In the aftermath, the Spechts landscaper filled in the pond but he refused payment. So the Spechts decided to pay it forward & began doing random acts of kindness of their own. A friend took the last photo of Richard in a Superman costume, used that to create the Reesspechtlife logo. They began accepting donations to pay for printing of cards to pass out when a random act of kindness occurs that reads: Through the tragic loss of our 22 month old son, Richard Edwin Ehmer Specht (Rees), we vow to make the world a letter better in his name. Help us help each other. Let’s all work together and do the small things that make a big difference. Our little boy’s life was brief, but we hope to make his legacy eternal. We all possess the ability to do something Super: Possession of this card is a solemn promise to pay it forward and perform a random act of kindness and be one of Rees’ Pieces. In conjunction with the mission that the Spechts have embarked upon, & through Bobby Hazen’s efforts at the LIDPTF, the SCF provided the funding to print 5,000 drowning prevention brochures to spread word & to include the logo on the back next to ours.

DEIDRA KEARNS 2012

We awarded our 2012 Kaylee Rivers Courage Award to emancipated minor, Deidra Kearns, who through perseverance and her never-say-never attitude, managed to obtain her Regents diploma from Smithtown High School West last year and held down a job all the while having no real place to call home. Deidra is now attending college and we are paying for her driving lessons so that she may become even more independent. It is our goal to assist her in obtaining a car & paying for insurance just as soon as she passes her road test. It is her goal to give back to all of those people who believed in her and helped her in her time of need.

ROBBIE LETTIERI 2011

In 2010, I was alerted to an email being circulated about a local boy who needed a non FDA approved surgery. This teen had Tourette's Syndrome so severe that he had to be home schooled to avoid injury to himself when he had a seizure and to combat the bullying that accompanied other's ignorance. When we contacted the family, they were trying to raise money for this surgery, no easy decision for a teenage boy. The family had met 2 others who had the surgery, one seemed completely recovered, & the other was still in a coma after the surgery.

As a teenager to have to make such a decision must have taken great maturity & great courage. So the SCF honored Robbie Lettieri with the 2011 Kaylee Rivers Courage Award. Robbie is the perfect embodiment of this award. Robbie, has his driver's license & is attending college. After the surgery, while in high school, Robbie started a chapter of the Lady Gaga Born This Way Foundation and toured local schools educating students on Tourette's Syndrome & bullying. Robbie also worked as a camp counselor to children with Severe Tourettes. And after the surgery, Robbie was on Good Morning America. In the interview, Robbie said that he was just happy to be able to be left home alone and that he just was happy to be a normal teen. But we want everyone to know that Robbie is not "just a normal kid", he is one extraordinary young man! And we applaud his decision & the courage it took to make it.

ARCHER 2010

The Kaylee Rivers Courage Award for 2010 was given to Tom Archer, a father of 5 whose son, Ben was hit by a car while riding his bike in October 2007. Since then Ben has been in a coma with Traumatic Brain Injury. Tom is a single dad raising 4 boys on his own, working in construction by day, and taking care of his boys in the evenings. The power of faith and love by those surrounding Tom & his boys is what is getting him through this. Tom set up a caringbridge page, (staystrongben) when Ben first was injured, Tom wrote as Ben. Tom continues to speak as Ben. Tom has turned this accident into his mission to give families of those with Traumatic Brain Injury (TBI) a resource and place to turn for guidance. He is now on the board of New Beginnings Community Center for TBI.