On April 8, during the height of the Covid-19 pandemic, then 11 year old Louis Caputo of Orangeburg woke up with some concerning symptoms. By four o’clock in the afternoon, the Cottage Lane student was transported to Valley Hospital and then to Hackensack Medical. Sadly, it was evident that he needed surgery to have one of his Kidneys removed. Two days later Louis was operated on and was diagnosed with having Wilms Tumor, a form of Kidney Cancer and in Stage 2. Louis started 14 weeks of grueling chemotherapy and other procedures. His prognosis is currently good and he has a great attitude. Unfortunately due to Louis’s Chemo treatment and being immune compromised his Doctors advised his parents to keep he and his brother Angelo out of in-person schooling. Louis is a kind and caring 12 year old kid who always wants to help others and makes sure everyone is feeling good. He loves playing video games with his brother, loves the Seattle Seahawks, and is an avid New York Yankees fan. Louis has promised his Mom that he will “hit cancer out of the park!”
Elijah Torres was born with a tethered spinal cord and a cyst on the lower part of his spinal cord, which he recently underwent surgery to remove it. Subsequently, Elijah was diagnosed at 3 months, the youngest ever diagnosed, with Bainbridge-Ropers Syndrome. This very rare neurological disease does not only cause severe developmental delay, but comes with other symptoms such as gastrointestinal difficulties, seizures, hypotonia, autism, slow weight gain, behavioral disturbances and more. Another common obstacle is feeding difficulties which is why he had a feeding tube placed when he was diagnosed. Commonly, these children are nonverbal and unable to walk. But it is still too early to tell if Elijah will ever do these. Doctors don’t know much about this disease because only about 250 people in the world have been diagnosed with this to date. Elijah has recently turned two and still cannot sit unassisted. He gets multiple therapies each week to help him with his condition. Elijah rarely makes eye contact and does not respond to his name. He is able to briefly track an object but cannot track a face as well. His parents are not sure if their beloved little boy can even recognize them, but remain hopeful. Through his battle with this disease he continues to be such a pleasant and happy little boy. Elijah lives in Valley Cottage with his family.
Skylar Hurley was born on November 14, 2017. Growing up, Skylar hit all her milestones on time and lead a pretty happy infant life. One day, her mother Amanda noticed that Skylar stopped making eye contact and being the giddy girl everyone knew. Doctors diagnosed young Skylar with Rett Syndrome. Rett Syndrome is a genetic brain disorder with symptoms that include but are not limited to problems with language, coordination, and repetitive movements with no known cure. Amanda has had to give up her career in the medical field to be a full time stay-at-home mom for Skylar as well as her aide, leaving all financial burdens to James. Being the only source of income, James is burdened with having to work extensive hours of overtime to support Skylar’s medical needs, since insurance does not cover a lot of the expenses. Her parents have hopes and dreams of one day seeing Skylar walk, talk and finally get to hear what Skylar’s beautiful voice may sound like when she finally is able to simply say, “mommy, daddy.”
Jelien Sirenma Ramos, also known as "Baby" by her family and "Beans" by friends, is 3 years old. She's the youngest of 7 kids. On January 25th 2019, alittle over a month after turning 3, Jelien was rushed to the ER at Maria Fareri Children's Hospital, with suspicion of a low platelet count accompanied by an ongoing fever that reached as high as 106 degrees.After getting the blood cultures back, Jelien was given an emergency blood and platelet transfusion as her body didn’t have the necessary defenses. After a bone marrow biopsy on January 30th 2019, Jelien was diagnosed with B-Cell Acute Lymphoblastic Leukemia (ALL). The following day Jelien went into surgery to get a port placed on her chest which is used to administer chemo treatments as well as a method to obtain a blood culture. Jelien is on several medications and has had many chemotherapy treatments that have weakened her little body. Jelien loves spending time with her family and enjoys going to the park, singing and dancing. Her family and friends have built strong bonds together and have faith that this Warrior Princess will come out victorious!
Riley Reynolds is a 2 1/2 year old from West Nyack, who was diagnosed with Craniosynostosis at 2 months old. Craniosynostosis is a condition in which the bones in an infant's skull grow together too early, causing problems with brain growth and head shape. Riley's first surgery was at 6months old. Since then she has had 7 surgeries in total, and numerous weeks spent in the hospital due to infections she got from the surgeries. In her more recent surgery all the hardware had to be removed due to infection, so she now has numerous open holes in her skull, which will be fixed in a major surgery down the road when she regains all her strength. Riley loves spending time with her family, especially her big brother Michael, who always makes her happy.Through all the surgeries and hospital stays she always has a smile on her face, and thanks to everyone who has helped her get to where she is today, she truly is a Warrior.
Kieran O'Neill is a 9 year old from Pearl River who is a fraternal twin with his brother Padraig. Kieran was diagnosed with autism five years ago after he underwent dramatic changes in his condition subsequent to back to back strep infections. He has since been diagnosed with PANDAS, a pediatric neuropsychiatric disorder associated with strep infections. To lessen the possibility of strep, Kieran's tonsils were removed in 2016, but he still has sustained 29 documented strep infections that have drastically impacted his well being. Before his diagnosis, Kieran had been a typical, active little boy but at 4 1/2 years old, autism set in and he became non verbal. With relentless effort, Kieran has learned to communicate through modified sign language, but his auto immune deficiency makes him vulnerable and sickly. Kieran's family keeps searching for treatments to help him, many of which are not covered by insurance. They are hopeful that one day Kieran can have a better quality of life.
Four year old Elle Fishman is from Piermont. Elle was born with Cerebellar Hypoplasia, an underdeveloped cerebellum. This causes severe delays in developing speech, learning to walk, and balancing herself, so at age four Elle cannot yet talk, stand or walk on her own. She is a very smart, strong and brave girl who wants to be independent and just like her friends. She doesn't get discouraged and always tries to do the most that she can do!
Sebastian Scully is a lively seven year old from Valley Cottage who was diagnosed with Eosinophilic Esophagitis, a rare chronic allergic reaction inflammatory disease that at this time has no cure. It involves different methods of treatment to relieve the pain and symptoms, including specialized nutrients and medications. Despite all this, Sebastian doesn't complain and is a happy student at Valley Cottage Elementary. He’s would like to be a Fireman like his Dad when he grows up!
Molly McGovern from Blauvelt is a 2016 graduate of Tappan Zee High School and is currently attending Rockland Community College, studying early childhood education. When Molly was 14 months old, she was diagnosed with a pineoblastoma, a type of malignant brain tumor. She had surgery to remove the tumor and then had chemotherapy with autologous stem cell rescue. She made a full recovery. Early in 2016, Molly began experiencing headaches. An MRI showed that she had a large mass pressing on her brainstem. Surgery performed on May 13, 2016 was able to remove 90% of the tumor, which was diagnosed as a benign meningioma. Molly recovered from surgery and was able to attend her senior prom and graduate on time with her class. The remaining tumor was treated with gamma knife radiation in July. The tumor, surgery, and radiation has left Molly with some paralysis in her face, hearing, etc… Molly will need to receive services to help her recover what she has lost and constant surveillance by her doctors to check for tumor regrowth. This can be costly on top of the surgical and radiation costs she has already received. Molly continues to be an inspiration to her classmates and others in the community who have needed help.
Noah Diaz, from Congers, is 5 years old and the youngest of 5 children. He was born with a severe heart condition, Hypoplastic Left Heart Syndrome and Double Aortic Arch and already has had three open heart surgeries. Noah also has a rare genetic syndrome, Kabuki, with developmental delays, generalized hypotonia and hypoglycemia episodes. As a result, Noah requires extensive medical treatments. He has monthly EKG s to monitor his heart as Noah will possibly need a heart transplant when he is older. Given the condition of his heart, even a simple cold can require oxygen treatments and doctor visits. Noah also goes to extensive therapies: physical, occupational, and speech to help with his development and muscle tone. With all his health issues, Noah is the happiest, the most loving and the most lovable little boy ever and is an eager kindergartener at Laurel Plains in New City.
Gabriella Carney is a delightful two and a half year old from Tappan who lives with a rare genetic liver disease called Glycogen Storage Disease (GSD). Those with GSD suffer from critically low blood sugar that can drop very quickly and without any warning. Without round the clock management, low blood sugar from GSD can lead to seizures, coma and life threatening issues. Life with GSD means never taking a break and never getting a day off, the risk of low blood sugar is ever present and something as simple as the common cold can become an emergency. Since her diagnosis in September 2015, Gabriella has battled with persistent low blood sugar, multiple hospitalizations and other medical related issues associated with the disease. In order to maintain metabolic control, her parents check Gabriella’s blood sugar and ketones (with a finger stick) no less than 8 times a day and often much more during illness and routine blood testing. She drinks large doses of cornstarch and protein powder every few hours, night and day, to provide her body with the backup source of energy to keep her blood sugar in the safe range. Gabriella goes for yearly liver sonograms and routine blood work every 3 months. Gabriella is the best little sister to her brother Matthew and brings joy every day to her loving family.
Danny van Schaik, a Suffern Middle School 7th grader with a mischievous grin, has a relentlessly savage type of Leukemia. The treatment includes chemotherapy and direct brain radiation. Danny has been hospitalized 7 times, almost died 4 times, experienced blood clots in his heart and lungs, and lost the ability to walk 3 times. Bravely, he has endured four major surgeries, countless spinal taps and bone marrow aspirations. With 10 months of brutal treatment to go, Danny manages to keep up with school and pushes himself in the gym. Danny is a fighter with a wicked sense of humor-all the makings of an exceptional young man.
Francesco is an active 7th grader at Pearl River Middle School. This past summer, Francesco was diagnosed with leukemia after his mom noticed unusual bruising on her athletic son. Francesco began aggressive treatment immediately and is facing this medical challenge with great optimism and spirit. Francesco is working hard to get well so that he can return to school with his classmates. He is excited about being able to go to Pearl River High School next year to be with his older brothers.
Haley was a healthy active 5th grader when she broke her leg while playing. At that time, a tumor was found in her femur and Haley was diagnosed with osteosarcoma. Haley was treated with ten months of chemotherapy, but the difficult decision to amputate the leg had to be made. Haley was fitted with a prosthetic that goes all the way to her left hip, and has made great progress being able to walk and do everyday activities using her new leg. Haley still goes to physical therapy, but happily has been able to return to the middle school where she is a 6th grader. Haley has faced her battles heroically with humor and determination. The family’s medical bills and related costs, including the astronomic price of a prosthetic leg, are not completely covered by insurance. As Haley grows, she will need new prosthetics and has already outgrown her first one. We hope to be able to support Haley and her family as she continues her recovery.
Isabella is a beautiful four year old from nearby Harrington Park, NJ who was diagnosed with a childhood cancer involving a neuroblastoma. Although surgery removed this malignant tumor, Isabella developed a rare autoimmune disorder and suffered many relapses. Specialists from Chicago and Memorial Sloane Kettering coordinate care for Isabella which includes chemotherapy, a daily injection, and medications. The family suffered more tragedy a few months ago, when Isabella's mom suffered a neck injury on Labor Day 2012 which has left her paralyzed. Throughout her treatment, Isabella remains a happy child that inspires those around her.
Max and Bree from New Hempstead are fiercely independent nine year old fraternal twins who were delivered prematurely at 26 weeks. Max suffered a stroke in infancy, leaving him partially paralyzed with Cerebral Palsy. He has had several intricate brain surgeries and will need more in the future. Bree sustained a dangerous preemie baby ailment that caused a massive rupture to her small intestine where much of it had to be removed. Bree has had ten life threatening surgeries with the possibility of more. Both children have learning challenges, but are thrivers more than survivors. Max's favorite phrase is "Don't help me, I can do it!" and these twins are truly a dynamic duo.
In the fall of 2008, Mickey was like any other ten-year-old boy. He was strong, healthy, a great ball player and an avid fan of all sports. He was a 2008 All Star Player for South Orangetown Little League and, joined his CYO and REC teammates in many basketball tournaments. He was popular among his peers. Above all, Mickey was an exceptional student and a pleasure to be around. So it came as a surprise, when he started to get headaches, nausea, and having anxiety. His family explored the cause of these symptoms without success. On January 8th 2009, Mickey awoke his mother and she knew this was something serious. One more trip to the pediatrician and a CT scan was quickly ordered. The CT scan revealed a mass in Mickey's brain. Mickey and his family were directed by the pediatrician to go directly to Morgan Stanley Children's Hospital in NYC; where a team of doctors awaited their arrival. Further testing confirmed every parents' worst fear- Mickey had a brain tumor. It was diagnosed as cancer-Medulloblastoma. Mickey immediately had surgery for the placement of a shunt in his brain to drain fluid that had been trapped due to the growth on his cerebellum.
On January 12th, Mickey underwent a seven hour brain operation to remove his tumor. The surgeon was able to remove 99% of his tumor. Mickey needed both radiation and chemotherapy. Mickey's course of treatment included 6 weeks of radiation and a 44-week session of chemotherapy.
Mickey started recovery, and then suddenly started deteriorating. More testing determined that he had a duodenal ulcer which was bleeding. Mickey underwent an emergency procedure to stop the bleed. The bleeding got worse and he was rushed into surgery. Surgeons were at a crossroads; the first round of treatment was to start within a week. If they did the surgery, Mickey would not recover in time. Treatment could not be delayed but Mickey was losing blood fast. He was already down 6 pints. A decision was made quickly. By the grace of God, surgeons were able to perform an embolization, where they used 40+ coils to stop the bleeding.
Mickey was finally on his road to recovery, but due to the seriousness of his tumor and the massive GI bleed, he remained very weak. Mickey had lost the entire use of his left side. He needed to learn how to walk all over again. After four weeks at Columbia he was transferred to an extensive rehabilitation facility in Valhalla, NY. Mickey returned to Columbia daily for his treatment.
Despite the complications and the setbacks, Mickey remained an optimistic happy young man who was beloved at Tappan Zee High School in Orangeburg where he was a dedicated and popular member of the junior class in 2015. Unfortunately, Mickey's battle was not over, and he passed on February 11, 2015. Even though Mickey passed, his experience raised awareness for pediatric cancer and brain tumor research. Mickey's family and friends have created Team Mickey and through their generosity have brought the community together as well as try to prevent other families from suffering as they did. "Mickey will forever be remembered for his strength, determination, and courage that will give his family and friends the strength needed to endure our tremendous loss," his family said in a statement. "Mickey proved to everyone who knew him and even those who didn't what toughness really is."
Sangeetha is an animated, friendly senior at Tappan Zee High School who was diagnosed with an inoperable brain tumor when she was only seven years old. Since that time, Sangeetha has undergone a vast amount of medical treatment-including chemotherapy, which in her own words, “ended her childhood.” Yet Sangeetha’s optimistic spirit asserted itself, even through another devastating diagnosis-this time, severe juvenile rheumatoid arthritis, which requires its own type of chemotherapy. Sangeetha’s arthritis is extremely painful, and drastically limits her movement and agility. She is in need of daily physical therapy alongside the medication that she takes every day. Even though her mobility is impaired, Sangeetha finds happiness in such pursuits of computer graphics which allow her to express her creativity while not causing her severe pain. Sangeetha’s family include her parents, her older sister who was inspired to pursue a medical career because of her sister’s struggle and a spirited younger brother. Sangeetha also has extended family in Mumbai and Bhopal.
Sean is a 7 year old little boy who is fighting cancer for the second time in his short little life. In September of 2004 Sean was diagnosed with ALL Leukemia at the age of 2 1/2 years old. He went through 2 1/2 years of chemotherapy, many medications and countless operating room procedures for bone marrow biopsies and spinal chemotherapy. He came through it like a champ!! Sean was cancer free for a little over two years. Upon one of his 6 month routine check-ups this past May with his oncologist, it was discoverd that Sean's cancer had returned. This was devastating news to the DePatto family. Sean spent 5 weeks in the hospital to begin chemotherapy again. He has had numerous hospital admissions since then. Because this is a relapse, doctors have to go after this cancer much more intensely. The DePatto family will be doing mainly in- patient treatment for the first 18 months. Sean will have more intense chemotherapy, take many more medications, and undergo many operating procedures, too much for his family to count. Sean is an inspiration to his family, friends, and many others for all that he has gone through and will be going through. He is a very strong, tough little boy with a big heart.As strong and tough as Sean was, his battle with leukemia was not over. His cancer returned for a third time and while Sean continued to fight, it was too much for his small body. Sean passed on Feb. 20, 2012 with his loving family by his side. Though his life was short, Sean's spirited ways and indomitable courage affected not only his relatives but all those who met him and were inspired by this young fighter. Sean is remembered with great affection and will continue to be loved "forever and a day" by those who knew him.
Tyler was only three years old when his mom noticed that his color wasn’t what it should be. Tyler was taken to the hospital, where he was found to have dangerous levels of liver enzymes and the long difficult task of finding a diagnosis for his condition began. The actual diagnosis was elusive as doctors tried to find a cause for his elevated liver enzymes. It was unknown if the problem was liver failure or hematological failure. The frustrating search and wait for a diagnosis led the Tobin family to six different hospitals. It was ultimately determined that Tyler’s illness was caused by PNH, a disease previously only documented in adults. This bone marrow failure syndrome requires chemotherapy and a transplant that was done in November 2010. Tyler has been responding well to the transplant, but there is a long way to go. The Penguin Plunge will help support Tyler as he starts to get those white blood cells dancing and makes a recovery from his illness.
Alex was a popular outgoing 4th grader at Valley Cottage Elementary School when he began to suffer from sharp headaches. Exhaustive testing revealed that Alex had an extremely rare type of mixed cell brain tumor. Alex underwent months of treatment and finally a doctor was sent in from India to operate as this type of tumor is so unusual. Just before surgery, a preoperative MRI showed that Alex's tumor had shrunk! A new course of treatment was decided on including a cutting edge radiation treatment that requires Alex to go to Boston. Alex is incredibly positive and perhaps this is due to his great family, his mom and brothers and sister. Alex is looking forward to getting well and being able to go back to school.
Bridget Kunz of Congers was brought to the emergency room at Westchester Medical Center last April. Her parents had noticed that she had become pale and fatigued and a blood test showed very low red blood cell counts, white blood cell counts, and platelets. She received her first blood transfusion that night. At just 4 years old, Bridget was diagnosed with acute lymphoblastic leukemia (A.L.L.) on May 4, 2015. She is being treated at the Maria Fareri Children’s Hospital at Westchester Medical Center. By mid-May, Bridget was sent home from the hospital to continue her treatment as an outpatient. She was only home for 5 days before suffering from a seizure. She was taken back to the hospital by ambulance. The oncology team determined that the seizure was caused by blood clots in her brain that had developed as a result of one of the chemotherapy medications she received. In addition to all of the chemotherapy Bridget receives, she also has to have blood thinner injections twice a day due to the clots. Bridget still has a very long road ahead of her which will be filled with many chemotherapy infusions, spinal taps, bone marrow aspirations, and MRIs. She has about 2 years of treatment to go. Despite all of this, Bridget is still the happy, fun, creative, and silly girl that she was before her diagnosis. She is also a terrific big sister to her brother and sister, Connor and Shannon, who are 2 year old twins.
Heather Matthews is a 14 year old special needs Tappan Zee High School student who is diagnosed with Traumatic Brain Injury from Viral Encephalitis. Heather has a severe seizure disorder and left side paralysis. Born and raised in Tappan, New York, Heather was struck with this rare virus at age two. Her life changed overnight as she regressed to a newborn and was paralyzed entirely on her left side. Her seizure disorder continues to be her daily challenge as she can experience up to 30 petit-mal seizures on any given day. Although her paralysis has progressed through extensive therapy, her left side weaknesses include her leg, arm, vision, and speech. Heather continues to have no use of her left hand. Heather’s family continues to look for ways to help Heather adapt and improve her left side as well as look for treatments that will help with the effects of the damage that was done to her brain.
Fieldstone Middle School student Aiyanna Faria was diagnosed with Dyke-Davidoff-Masson syndrome in 2009. This rare condition is characterized by unilateral atrophy of cerebral hemispheres, enlargement of the ipsilateral sulci, ventricles, and cisternal spaces, decrease in the size of ipsilateral cranial fossae, overdevelopment of paranasal sinuses and mastoid air cells, and unilateral thickening of the skull. The effects include seizures, facial asymmetry, contralateral hemiparesis and mental retardation. In simple terms, one side of her brain shrinks while the other side grows as she does. The original doctor who diagnosed "Nena", as she is lovingly called, can no longer treat her due to insurance changes. The family was able to find a doctor to implant a vagal nerve stimulator to help lessen the seizures, but this has not been as successful as was hoped for. Nena currently has 10-15 seizures a day. These seizures are starting to be grand mal types which cause dizziness, migraines and vomiting. Nena takes strong medicine to help with the seizures. Several recent tests show no brain function on the left side of her brain. Now, with as many seizures as she's having and the amount of time that has passed, the right side is starting to be affected. She has been having a very hard time with memory these last few months. Nena is fun and loving. She is a good girl and despite these challenges has maintained a positive attitude. She's a go-getter and will do almost anything just to be a normal 13 year old. Although her family is realistic to the fact that there is no cure, they just want to give her as much time as they can. We want her to do as much as she can with as little effects from her treatment and disease as possible. She deserves to be able to live her life as normally as possible. Unfortunately for Nena, her normal is 10-15 siezures a day and has never had a seizure-free day since her diagnosis. Despite this, Nena’s heart is as big as the world. She won't let her mom cut or even trim her hair because IF she has to undergo brain surgery, she wants to donate her hair to a child with cancer.
In 2001, Alan and Anne Marie Monahan delivered healthy twin girls, Grace and Emma. While still in the hospital, Emma contracted bacterial meningitis which has severely debilitated her ever since. With great fortune, Emma survived, but with many disabilities that do not allow her to hold herself up or even to feed herself. Due to her condition, Emma requires much medical and therapeutic help. Though she doesn't communicate by talking, Emma lets her feelings be known through her laughter, her smiles, her coos and her shouts. Everybody loves her so much and Emma is an inspiration to all.
At three months old, the Gankiewicz family learned that their daughter Ashley had a disorder known as Neurofibromatosis Type 1. At the age of two, Ashley was diagnosed with an inoperable brain tumor on the optic nerve. After 60 weeks of chemotherapy, the tumor was stabilized, but Ashley still battles a range of medical issues. She has spontaneous tumors that can pop up anywhere and has had to have four surgeries by the time she was six. Ashley visits eight different doctors every three to four months and needs MRIs with sedation at least two times a year. Despite everything she has gone through in her young life, Ashley remains positive and continues to brighten the world of those around her. The proceeds of the Penguin Plunge will go towards Ashley’s health care bills and out of pocket expenses, which average more than $25,000 per year.
Clara Ryan of Piermont was diagnosed with Lymphatic Malformation (LM) a few weeks before she was born. At three days old, she had a tracheostomy and g tube (for feeding) so that she would be able to breathe and eat. LM causes cysts to grow uncontrollably and these can impact her airway, cause growths on her face and impact her vision, her muscles and tongue. As a result, this beautiful four year old gets PT, OT, vision therapy and speech therapy. Clara also requires frequent, ongoing surgeries for the LM, some of which have to be postponed because Clara gets infections more easily through her trach. Clara is an inspiration to help all children whose illness makes them look different as her family is committed to teaching other children to be accepting and aware of these medical differences.
Brian is a four year old boy from Sparkill who was diagnosed this summer with ataxia-telangiectasia. Ataxia-telangiectasiais a rare genetic condition that affects 500 children in the US and has the effect of muscular dystrophy, cerebal palsy, cancer and immune deficiency all at the same time. Brian will most likely be in a wheelchair by the age of ten and faces many medical challenges. Sadly, ataxia-telangiectasia is not curable at this time, but as with all rare diseases, Brian's family is encouraged by research into treatment that would not help only children with A-T but other diseases with similarities.
Khloe Berry of Valley Cottage, aka Khloworm, is a bright, charming two year old who began having uncontrollable seizures after her first birthday. These seizures come multiple times a day and vary in severity, and they have impacted Khloe’s ability to talk, There are 73 known causes of seizure disorders and it is important to find out which one has affected Khloe. If the wrong treatment is used, it can be fatal and Khloe had one such incident this summer that required hospitalization. This testing is exhaustive and expensive and not covered by insurance. The current treatments that Khloe is getting dulls her mind and makes her lethargic. Khloe's mom and dad are also looking for a service dog that can anticipate Khloe's seizures and alert them when they start, especially during the night.