|Dylan Michael Allen||2007|
|Robert Valli III||2004|
|Scott David Kelnhofer||2001|
|Ryan and Zachary Castro||2000|
|Thomas and Michael Kerimian||1997|
|Martha Burdick Kandel|
|Edward Michael Gregorio|
|Marlyse Claire Nugent|
Just last spring Katie was a beautiful, happy, feisty, healthy young lady with silky long blonde hair, bright blue eyes, a warm smile, her Dad’s dimples and great sense of humor. Her favorite things to do were shopping, watching movies, playing with her cousins and fighting with her brothers. Although the baby of the family she could hold her own with her big brothers Michael and Patrick. Nobody pushed Katie around.
Memorial Day weekend 2007 we noticed Katie’s voice sounded odd. She sounded like she had a cold, but she felt fine and went off to Florida with her Grandparents. While away Aunt Elizabeth complained Katie was snoring, and when she returned I observed her sleeping. She was very restless and all night long she would sit herself up in bed, still sleeping, and take deep breaths. Lying down on her back she could not breathe. I took her to our pediatrician suspecting sleep apnea. Instead the doctor found her right tonsil was the size of a golf ball and was cutting off her airway. Other than this huge tonsil she had absolutely no other symptoms. She had no pain, no fever and no lack of energy. We never imagined the nightmare that lie ahead.
On Katie’s 11th birthday, after a week of hospitals, a multitude of doctors and a series of tests, we were told her diagnosis and our lives were turned upside down. We were informed she had a type of Non-Hodgkin’s Lymphoma called Burkitts. We later learned that Burkitts is the fastest growing human cancer and was not only present in her tonsils. The cancer was in her lymph nodes, her liver and her stomach. She immediately began intense chemotherapy at Schneider Children’s Hospital.
Over the next four months she suffered the effects of treatment: nausea, vomiting, severe mouth sores and hair loss to name a few; however she remained her feisty self and entertained us all with her unique sense of humor and smile. She rarely complained about anything except taking medicine, and she sped through her protocol in record time. We all thought that she was doing so well. Her doctors were very pleased, and on September 20th she was discharged from the hospital.
Unfortunately she had missed her graduation picnic and the entire end of the year festivities from June. She missed starting middle school in September with the rest of her friends. Katie couldn’t wait to see her friends again, figure out how to open her new locker and find her way around the huge new school. Then in October we were told that Katie could ease back into normal activities.
She had a wonderful 4 days of school before she felt ill again. On October 15th we went back to Schneider Children’s Hospital, our home away from home, and learned our greatest fear had been realized. She had relapsed after only 3 weeks. The cancer had now spread to her bone marrow and spleen. We were told that her only chance for survival was to begin an intense chemotherapy regimen to get her disease under control coupled with a bone marrow transplant. Because of Burkitt’s Leukemia’s rarity there was no protocol to follow. Dr. Atlas at Schneider’s enlisted the help of Dr. Mitchell Cairo from Columbia Presbyterian and together they were able to get Katie into remission and ready for transplant.
We have had several glimmers of hope. First, our son Michael was determined to be a perfect match for her bone marrow and able to be her donor. This was such a blessing because a complete match leads to fewer complications after transplant and he was readily available when time was of the essence with this aggressive disease. Second, the disease responded well to the chemotherapy, and we were able to achieve a good remission. Third, despite the fact that she was immuno compromised for so long, she avoided any serious life threatening infections, which proves even without white blood cells, she’s still a fighter!
As I write these words, Katie remains at Schneider’s recovering from her transplant. Her muscles and bones have suffered from inactivity and she requires physical therapy. She sleeps most of the day because of all the pain medication and anti-nausea medicine. She has been bed ridden and has not eaten a meal since we were last home on October 14th, 3 ½ months ago. She will require lifelong treatment and hormone injections. Due to the pre-transplant total body radiation treatments, she will almost assuredly develop other tumors and complications. For the next year she will remain isolated, will have to be extremely careful with her diet and her visitors will be limited due to her immuno-suppressed condition. She will not be able to leave the house, spend time with her cousins or attend her brother’s graduation. These last eight months have been difficult and the months to come present their own challenges. We will get through it with the help of the outstanding doctors and nurses at Schneider Children’s Hospital, all the love, support and prayers of our wonderful community of family and friends. We especially would like to thank the Gladiator Fund, all its supporters and the entire New Hyde Park Community for honoring Katie and for all the good work that you do for the community.
|Dylan Michael Allen||2007|
Dylan Michael Allen was born on September 18, 2002 to proud parents Geri and Michael Allen and big brother Ryan and big sister, Brianna ("Sis").
Dylan was born without any body hair (no eyelashes, eyebrows, or hair of any sort). His fingernails and toenails were extremely sort and thick. During Dylan's first six months, his nails did not change and there was no hair growth. No comments were made during his first few checkups to his pediatrician. When he was six months old, we discussed his lack of nail growth. It was suggested that we see a dermatologist to see what can be done to spark their growth. Upon seeing the dermatologist, we were told that Dylan's features were consistent with either Stu Webers Syndrome or Ectodermal Dysplasia (ED). We then brought Dylan to a pediatric dermatologist that specialized in ED who confirmed hat Dylan did indeed have ED.
The ectodermal dysplasia (ED) syndromes are a group of about 150genetic disorders that affect the ectoderm, the outer layer of tissues in a developing baby. The ectoderm contributes to the formation of many parts of the body, including the skin sweat glands, hair, teeth, and nails. During embryonic development, these and/or other parts of the baby's body, including the lens of the eye, parts of the inner ear, the fingers and toes, or nerves, among others may fail to develop normally. When a child has at least two types of abnormal ectodermal features - for example, malformed teeth and extremely sparse hair - the child is identified as being affected by an ED "syndrome". Physical symptoms can range from mild to extremely severe. Physical symptoms can range from mild to extremely severe. The latest estimate, published in 1990 edition of The Birth Defects Encyclopedia, is that as many as seven of every 10,000 babies are born with ED syndrome.
Upon searching the internet, we came across a great organization, known as the National Federation fro Ectodermal Dysplasias (NFED)). The timing could not have been more perfect. The NFED was holding the annual conference in Iselin, NJ.. We contacted them and attended that conference. We received a wealth of information from prominent physicians and geneticist's who have takes a special interest in ED. Based on heir clinical evaluation of Dylan, it was suspected that Dylan had a from of ED know as Clouston's syndrome. Luckily for us, there was actually a genetic test for this particular form of ED.
When we returned from the conference, we met with a geneticist. She agreed that most likely Dylan had Clouston's syndrome. The blood was drawn and the test was ordered. About 8 weeks later, the results arrived. The test confirmed that Dylan had Clouston's Syndrome.
Clouston's Syndrome involves little or no scalp hair, extremely slow growing nails, excessive ear wax, thickening of the palms and soles of the feet, thickening of the skull. It can be associated with teeth abnormalities. We do no know at this time if Dylan's teeth will be affected. Once he is mature enough to sit for a full mouth x-ray, we will know if his secondary teeth are present.
My name is Noel and I suffer from a disorder known as Neurofibromatosis. It is a genetic disorder that I have lived with since birth. Which has been sixteen long years Since it varies greatly from one person to the next, it's hard to find an afflicted person that shares the same complications that I do. This is why I think of it as the lonely disorder. Most of the time I feel all-alone on this earth. The complications I have to deal with are learning disabilities, fine and gross motor problems, involuntary movement disorder, speech problems, pain and sadness. These are all caused by a tumor known as a plexi-neurofibroma that is located in my right cheek. My cheek is much larger then the left one, my right is distorted as well as the right side of my lip and nose. The right ear is also larger and the ear canal collapsed as a result of tumor pressure. There used to be a tumor in my right lower jaw, it has since been removed. A hole and two molars remain in that lower right jaw bone. My cheek is turning brown and so are portions of the right side of my neck. The brown area is called a cafe-au-lait spot. I also have a growth between my scalp and skull on the right side. There is nothing they can do for this, it is causing my straight hair to turn curly, and in some spots fall out. On the inside of me that plexi-neurofibroma also creates problems, it loves to hang on nerves and cause pressure and pain. I have had several surgeries; but overall there is nothing that can be done. I just started a trial study this year with a new drug that is being researched. It has been found that in some people with Neurofibromatosis this drug has shrunk the tumor. Since it is a blinded study I don't know if I am taking the drug or the placebo. I used to wish for friends, now I just wish for the discomfort to go away.
Jake Riekert was born on January 17, 1999. He has two sisters, Nicole 15, Christen 12, and one brother, Steven 10 years old. His parents, Lori and Steven were born and raised in New Hyde Park. Steven works for the Long Island Railroad, and Lori was a cake decorator at Reinwalds Bakery for 17 years until the business closed.
Jake started kindergarten in September 2004 at the New Hyde Park Road School. He enjoyed school and making lots of new friends. He enjoys riding his dirt bike at his grandparent's house in Pennsylvania. Jake also loves helping his dad repair things around the house, and working side by side with his grandpa doing odd jobs.
In October this energetic, robust little boy became very quiet, tired and listless. After a doctor's visit and blood tests, he was diagnosed with A.L.L. Leukemia. Needless to say his family was devastated, within two days he received spinal taps, bone marrow tests, and major chemotherapy. Jake has a very large, extended family and with their help, love and prayers he will pull through this. He also has a wonderful group of doctors whose main concern is getting Jake healthy. They have given us a lot of hope.
We were told his treatment will last a full 3 years until he is considered cured. He has lost all of his hair and has blown up from the steroids. His white cell count reached the safety zone and Jake is looking forward to returning to school in the near future.
We know there are a lot of ups and downs with this disease, but with the help of family and friends we will get through this difficult time.
Lori and Steve Riekert
Robert Valli III was born on June 19, 1996. Both of his parents are New Hyde Park Memorial graduates. His father Rob, graduated in 1983 and his mother Jill (Spolarich) in 1984.
When Jill was 20 weeks pregnant, she suffered a cardiac arrest at work. CPR was performed by a co-worker. She was resuscitated multiple times that day by members of the Melville Fire Department and hospital personnel.
One Hundred days after the cardiac arrest, Robert was born at full term. He weighed 5 lb 9 oz and spent 10 days in the NICU. Robert was left with a combination of neurological complications that impair his speech, gross and fine motor skills. From the time he was 3 months old, he has had thousands of therapy sessions (special educations, occupational, physical, speech, oral-motor, auditory and vision therapy).
Robert's condition is steadily improving. He is presently a 2nd grader a the New Hyde Park Road School, He plays soccer with the Wildcats TOPS Special teams. He is involved with horseback riding and karate programs which are specially tailored for physically challenged children. He is a Wolf Cub with Cub Scout Troop 489. He will receive his First Holy Communion this May at Holy Spirit Church.
His family is hopeful and his future is looking brighter. Thanks to the Gladiator Fund and it's supporters for helping Robert as he continues to improve and develop.
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Madelyn Sipperley was born on November 29, 2001. That day was one full of surprises. The first surprise we got was when the doctor announced, "It's a girl!" Almost everyone expected that we were having a boy, so you can imagine the family's surprise. The next surprise was of a more serious nature. Based on initial assessments after her birth, the doctors suspected that Mady had Down Syndrome. Down Syndrome is a chromosomal abnormality in which the person has one extra chromosome. Instead of 46 chromosomes, the person has 47. Over 6000 babies are born in the United States each year with Down Syndrome. Next came the most difficult news. Mady was born with a congenital heart defect called an AV Canal, which would definitely require surgery to repair. An AV Canal is a large hole in the center of the heart. The walls between the upper two chambers and lower two chambers are deformed, causing too much blood to pump into the lungs.
From the beginning, Mady was an excellent baby. She was very easygoing and content. She was always happy and smiling. Despite her issues, Mady made excellent progress from the start. She was evaluated at a few weeks old, and began receiving early intervention services at about 6 weeks of age. We immediately chose the Association For Children With Down Syndrome (ACDS) to provide Mady with her services. ACDS serves children from birth to five with Down Syndrome and other developmental disabilities. They provide home- and center-based services at their school in Plainview. Mady currently receives speech and language therapy, physical therapy, occupational therapy and special instruction services at the school.
Mady's therapists are thrilled with the progress she has made. Shortly) she will enter the toddler program at ACDS.
Mady did have her open heart surgery at 3 1/2 months old. The surgery was performed at North Shore University Hospital in Manhasset. The surgeon was able to successfully make the repair on her heart, and was extremely pleased with the results. Mady made a remarkable recovery and was home from the hospital in only 6 days. We were extremely relieved that our first obstacle was overcome so successfully.
Mady is a joy to everyone she meets. She enjoys spending time with her grandparents, aunts, uncles and many cousins. She is so happy and lovable and has become a favorite of the therapists and teachers at school. Mady is eager to learn and is making progress each and every day.
On Friday October 3rd, 1997, Ryan Francis and Zachary Rafael Castro were born 9 weeks early by emergency Caesarean section. Ryan was born weighing 3 lbs. 9 oz., while Zachary was 2 lbs. 4 oz. Both were given diagnoses of "extreme immaturity" and were immediately incubated on oxygen and IVs. Their weight dropped to 3 lbs. and 1 lb. 14 oz., respectively. They were so tiny we could hold them in the palm of our hands. Ryan and Zachary also had a series of medical issues and concerns.
Ryan came home from the hospital five weeks after he was born. He weighed 4 lbs. 12 oz. Since he was exhibiting bradycardia (slowness of the heartbeat) and sleep apnea (cessation of breathing), he had to wear a monitor for his heart rate and breathing. Each time the alarm sounded, somebody had to check him immediately to make sure he was still breathing. Ryan had to remain on the monitor for almost a year.
Ryan also had severe gastric reflux, which resulted in frequent vomiting and also affected his heart rate. He was on medication and had to sleep in an upright position. But his pain was so intense that his body would become stiff and rigid, and he couldn’t sleep. He was constantly awake and crying from the discomfort.
Zachary came home almost 8 weeks after he was born. He weighed 3 lbs. 15 oz. His bradycardia was under control, but he couldn’t breathe, suck or swallow at the same time. At first, he was mostly fed intravenously because bottle-feeding was a major problem, as it would take him close to 2 hours to finish 2 ounces of milk. He had to constantly be stimulated so that he would continue to drink.
Since birth, both Ryan and Zachary have been examined and treated by a multitude of physicians and specialists. Both had to receive blood infusion therapy at the hospital for six months after being discharged in order to prevent respiratory viral syndrome, which often affects the heart and lungs of premature babies. They have visual acuity problems and wear glasses for this condition. Ryan just had surgery to correct a bilateral inguinal hernia and hydrocete. Zachary will need to have surgery for that as well.
Both Ryan and Zachary are developmentally delayed in all areas and are small for their age. Ryan and Zachary are hypotonic. Since birth, they have been receiving special education, in addition to physical, occupational, and speech therapy through the New York State Early Intervention Program. The recommendation now is for them to wear special weighted vests designed to increase coordination, muscle strength, flexibility and spinal support. They will remain in therapy to focus on their gross and fine motor skills, as well as for cognitive and overall functioning skills. They are still tactile-defensive but are happy and loving boys, especially considering all they have been through.
Every bit of progress Ryan and Zachary make is a major milestone for us. We love them deeply and thank God for them. They are both very cute and lovable little boys, and we look forward to each new day with their precious smiles and laughter.
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Matthew Powderly is the second child of Mike and Maryann Hayden Powderly. He was born with Down’s syndrome in May 1991. He lives in Hicksville with his big brother Sean and his younger brother Brian. Both Mike and Maryann graduated from New Hyde Park Memorial High School. Mike Graduated in 1978 and Maryann in 1979.
Matthew graduated from The Association for Children With Down’s Syndrome School in June 1996. He had been attending ACDS since he was 8 weeks old. He currently attends Summit Lane School in Levittown, where he is in a Special Education fourth grade class. He continues to receive speech, physical and occupational therapies.
The support, love and attention Matthew receives from his parents, brothers, grandparents, aunts, uncles, cousins and friends is what enables him to continue to grow and be the funny and loving boy that he is. KEEP UP THE GOOD WORK, MATTHEW!!!
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Our daughter, Jessica was born on September 26, 1988 with Down Syndrome. My wife Lisa and I feel very fortunate because she is a very high functioning child. Jessica began school at the Association for Children with Down’s syndrome when she was two months old. She graduated from ACDS at age five and now attends Summit Lane School in Levittown where she is doing extremely well, as a matter of fact; we received a note from her teacher saying she is going to be moved to an advanced class.
Jessica has an older sister Brooke and a brother John. My wife and I give them a lot of credit for the way Jessica is learning and developing, because along with us, they always keep her going whether it be with homework, dancing, soccer, wrestling or just running around crazy which she loves to do.
My wife and I are very proud of our family and the way we all pull together to help someone who needs just a little extra help to get along. Our daughter Jessica is the most loving little girl in the world.
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Johnny was diagnosed with Acute Lymphotic Leukemia (ALL) when he was two years old. Because of a relapse and set backs he continues to receive Chemotherapy.
He loves fire trucks and enjoys going to the firehouse with his dad. Johnny’s father is a volunteer fireman with the New Hyde Park Fire Department.
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First let me start by saying that the Gladiator Fund is one of the most inspiring programs I’ve ever heard of, congrats to you and all your staff.
Linda and I have been married since 1990, and we have a nine year old named Michael. He was born with a severe left clubfoot deformity and with Spastic Paraperesis. He is missing two fingers on his left hand and one on his right hand. They were amputated in the womb from constricting amniotic bands, formed from the amniotic sac surrounding the baby. He has had six operations on his left leg and foot, two operations on his right leg and one operation on his right hand to save another finger, which is barely there.
Both Linda and Michael were born with Familial Spastic Paraperesis, which affects the neuromuscular system. It causes spasticity in the limbs and joints It gets worse with age, and there is no known cure for this condition. Medical specialist and Social Security consider Linda and Michael totally disabled. They require physical therapy on a daily basis, medication and frequent doctor visits which are not covered by my Wal-Mart insurance.
Michael’s condition requires more surgeries with extensive rehabilitative therapy. He attends public school because we can't afford the special needs schooling. He can walk very short distances, but uses a wheelchair for longer distances. Linda’s condition has worsened over the years but we haven’t been able to do anything for her because we’re doing all we can for Michael. We moved to North Carolina because the cost of living is a little less, but medical insurance is skyrocketing, and I can only afford the basic plan. I had two major eye surgeries to correct a condition called Extropic Diploplia, which is Double Vision caused by weak eye muscles. I used to be a meat cutter in a supermarket, but my doctor says my meat cutting days are over. Now, I sell membership cards at Sam’s Club. I don’t make a lot of money but we have our faith and sometimes that can go a long way. Anything you can do for us would be greatly appreciated. Michael’s dream is to be a great basketball star. We don’t have the heart to tell him that he is not physically capable.
Thank you so much!
Anthony & Linda Lananna (Class of ‘74 and ‘79)
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