47th Annual

Sunday February 22, 2009

Official Countdown To Telethon 2009:

Young Ambassadors

BRADY BARTELL -
BUFFALO HEARING & SPEECH

Brady Alexander Bartell was born on Christmas Day, 2003.  He was premature – 5 weeks early.  He was a healthy 5 lbs. 15 oz, but had immature lungs and was held in the NICU for 10 days, 3 of which on a respirator.  Even though his entry into this world was a bit rough, he weathered the storm well and recovered well enough to come home on January 4 ^th .   

Upon Brady’s release from the NICU, we were told that he failed his newborn hearing screening.  We were instructed to follow up with Women and Children’s Hospital for an ABR (Auditory Brainstem Response) test to rule out hearing loss.  We left the hospital, delighted, to take our child home, never thinking that anything could be amiss due to the fact that we had no family history of hearing loss.  

Over that month, the longest month of our lives, we “tested” Brady’s hearing at home.  It was difficult to tell.  He seemed to hear, or so we thought.  We went for his follow up test on January 29 ^th with the audiologists at Women and Children’s Hospital.  That was the day that changed our lives forever. 

We were told that day that our son was deaf.  Deaf.  The words are hard to say today, and were incomprehensionalbe to say that day, and saying them seemed so foreign. We had so much to learn about deafness, our options, the causes, we just didn’t know which way to go. With our world spinning, we were guided by the helpful, caring hands of the audiologists and our ENT at Women and Children’s Hospital toward our promising future. Through their counsel, we were taught about the inner workings of the ear, discussed possible options, and were given many things to think over.  However, it didn’t take us but a moment to decide that a Cochlear Implant was the way to go, and we haven’t looked back since.   

On August 25 ^th , 2004, Brady received his implant and our entire world changed. Instead of a child who heard nothing, we had the possibility of a child who could hear almost everything!  We became involved with Buffalo Hearing and Speech’s Oral Deaf School.  Brady received Speech Therapy, Occupational Therapy, Physical Therapy, Special Education, and Teacher of the Deaf services.  Since then, his language has become remarkable and he functions with limited modifications in the general education environment.  Currently, Brady is mainstreamed in Pre-K, beginning to read (at the tender age of 4), and learning to function socially in the general education environment.  While he still needs many related services, and most likely will always need some level of them, his progress is truly amazing!  We are so fortunate to live here in Buffalo, where we have such wonderfully caring, supportive and educated individuals serving the deaf and hard-of-hearing community! 

Over the years, we have come to depend on Women and Children’s Hospital for assisting us with so many of the road blocks that have popped up along the way – the Feeding Clinic, Genetics Counselors, ER Staff and Variety 7 (7 ^th floor of the Variety tower), and Occupational Therapy – just to name a few.  Without both the staff at Women and Children’s Hospital and Buffalo Hearing and Speech, our path would have been very different.  We are honored to be here to help give back to those who have helped us so much, so that they may continue their work to help others!

VICTORIA "TORI" DALE -
MOVING MIRACLES

Tori is 4 years old was born second in a set of triplets to Bernadette and David Dale. Bernadette is a registered nurse at Kaleida’s Millard Fillmore Gates Circle and David is self-employed. Tori attends school at the Center for Handicapped Children (CHC), and younger brother Daniel attends ACNS preschool. 

Tori was born with Tetralogy of Follot and coarctation of the aorta, which resulted in her undergoing open heart surgery at five months old. She has also been diagnosed with Hydronephrosis (which resulted in two kidney surgeries), Reactive Airway Disease, Gerd (for which she is on medication), Scoliosis (she wears a Boston body brace and AFO’s), Global Developmental Delays, and is immunosuppressed. She receives monthly infusions for her immunosuppression and has been hospitalized / intubated various times for a fever of unknown origin

Despite everything that has been thrown at her at such a young age, Tori keeps a busy schedule. She dances with the Moving Miracles dance program, ice skates with SABAH, swims, and plays baseball. She also loves music, playing with her brother and friends and watching Clifford cartoons.

JACOB KOZIEJ -
SABAH

On February 11, 2004, Jacob Koziej was born 11 weeks premature.  He was only 15 inches long and a little over 3 lbs.  After 7 ½ weeks in the Neonatal Intensive Care Unit, Jacob was given a clean bill of health and sent home.  Over the next few months, all seemed to be going well, Jacob was getting bigger everyday.  Cognitively, Jacob was doing great, starting to talk and even able to identify colors.  We were excited, thinking that everything was OK.  However, looking back, there were signs that all was not right, but we chalked up any physical delays to his early birth.  Starting at 6 months Jacob was getting physical therapy, but by the time Jacob was one, he was still not meeting the normal physical milestones of a child his age.  It was the Robert Warner Clinic at Children's Hospital who first suggested there might be a problem.  They sent Jacob for an MRI, which showed some brain damage.  After another meeting with the clinic, Jacob was diagnosed with Spastic Diplegia Cerebral Palsy.  Our world was crushed, we had no idea what to expect for Jacobs future.  Through many meetings with some wonderful doctors and therapists, we began to understand and come up with a plan of care for Jacob. Jacob is getting Occupational Therapy, Physical Therapy, Counseling and Aqua Therapy.  He also gets Botox injections to help elevate the spasticity in his legs. 

ELIJAH MAYFIELD -
AUTISTIC SERVICES

Elijah Mavfield was born on August 10, 2001 after a full term pregnancy. He weighed 6 pounds and 9 ounces and there were no reported complications. At the age of two years old, his family noticed that he lost his acquired vocabulary and had become completely nonverbal. With no where to turn, Elijah’s mother went to the Robert Warner Center for assistance. Elijah was three years old when he was diagnosed with Autism by the doctors at the Center. They immediately recommended that Elijah be switched from the preschool he was attending to a more appropriate placement that could address his needs.  

Elijah currently resides in Buffalo with his mother and two siblings. He is the son of Ms. Cheryl Gill and Mr. Rodney Mayfield. Both of Elijah’s parents play a very active role in Elijah’s life.  

Elijah is a healthy young boy with high needs for sensory integration, physical activity, and motion. He also demonstrates severe deficits in communication skills, socialization, daily living skill and motor skills. Elijah receives Speech and Occupational Therapies provided by the school to address his sensory and communicative needs.  

MALENA MERCURIO -
CAMP GOOD DAYS

Malena had just turned 3 years old when she was diagnosed with Acute Lymphocytic Leukemia (ALL). We brought her to our pediatrician on July 11, 2006 because we noticed bruises on her legs and back. At first we thought that it was just normal, childhood bruising but when the tiny bruises on her back did not go away, we wanted her to see a doctor. Our pediatrician ordered a STAT blood test and discovered that her platelets were very low. We immediately brought her to Women & Children’s Hospital. Dr. Brecher, the chief pediatric oncologist, met with us in the emergency room and suggested that we stay over night to have a bone marrow aspiration Wednesday morning in order to rule out Leukemia. Dr. Fitzpatrick preformed the procedure on July 12. We were crushed when told that Malena did have ALL. We stayed at Women & Children’s Hospital for just over a week. In the whirlwind of treatment that ensued, the staff at Children’s stayed focused on Malena’s care and took very good care of her! Julie Higgins, our oncology nurse, Dr. Fitzpatrick, our primary oncologist, and many other doctors and nurses on Malena’s team were all very patient and took the time to answer all of our questions. We knew Malena was in good hands. We found out 8 days after diagnosis that Malena was an early responder. She was in remission! The protocol for ALL is approximately 2 1/2 years of chemo. Malena’s last day of Chemo is Nov. 9, 2008. We will continue to go to Children’s for monthly checkups until she has been cancer free for 5 years. 

After Malena’s first phase of treatment, we received the news that she was still in remission but that she now had spinal meningitis. Women & Children’s Hospital oncology department coordinated with their infectious disease department, and between Dr. Fitzpatrick and Infectious Disease specialist Dr. Ogra, they developed an around-the-clock treatment plan that worked for Malena. After 8 weeks of IV antibiotics, the spinal meningitis cleared up. We were back on track and just treating the ALL. 

Malena’s diagnosis was the absolute worst thing that ever happened to us but we did discover how truly blessed we are. We had friends, family and strangers from all over supporting us! We were also introduced to many beautiful people and organizations. Camp Good Days and Lisa Donato, CGD’s regional director, have been super supportive. This organization has helped us to deal with our difficult situation. Our children LOVE all of the activities planned by CGD but even more than that they love the volunteers and the counselors! CGD is a place where they can go to get away from the stress of Leukemia. They have met kids their own age who understand what it is like to have cancer or have a sibling with cancer. As parents, we have met other parents who are living with the same fears and uncertainties that we have experienced. It is nice to know that we are not alone. When the kids are with Camp Good Days, they are anything but lonely! 

Malena is now 4 ½ years old. She attends East Aurora Preschool and is very excited to begin Kindergarten in the fall. Our family went on Malenas “Make-a-Wish Trip” last October. I can only describe it as a “honeymoon” for our family! We stayed at Give-Kids-the-World Village and went to Disney World. Malena and our family had so much fun together! 

Malena loves to tell stories (especially “The Three Billy Goats Gruff”), play veterinarian, sing, dance and play with her Pretty Little Pony collection. She is enthusiastic about everything she does and is full of life. 

Malena's siblings are wonderful! They have been great with Malena throughout all of her treatments! Jamison is 9. He is in the 4th grade at Main Street Elementary. He is a voracious reader and loves football. He is very clever and is always telling jokes that he has created. Mackenna is 8. She is in 2nd grade at Parkdale Elementary. Mackenna is a fish and loves to swim! She is also very creative and loves arts and crafts. Mackenna and Malena share a room and we love to listen to them giggle before they fall asleep each night. Tony is 6 and is in Kindergarten at Parkdale. Tony is one of a kind! He is full of energy and gives 100% to everything he does, from sleeping to playing sports. He just started Karate and he loves it! 

ABIGAIL NORTHWAY -
ST. MARY'S SCHOOL FOR
THE DEAF

Abby Northway was born full-term on August 2, 2004 at Mercy Hospital.  The first sign of trouble came as soon as she was born...both her parents and her doctors heard a very weak cry coming from this 6 lb. 14 oz. baby girl.  When the doctors examined her further, they noticed that she had colobomas in both eyes, which means that part of her iris and retina were missing.  Abby was also born with moderate to severe hearing loss, as well as bilateral hip dysplasia.     Within a few days, the doctors had diagnosed her with CHARGE Syndrome, a genetic collection of birth defects that involves hearing loss, vision problems, cardiac defects, swallowing problems, and breathing problems.   

Along with her vision and hearing losses, Abby was also born with two heart defects and difficulties with swallowing.  Her airway was very small and swollen, which led to many episodes of respiratory distress.  Abby was at Women and Children’s Hospital for many weeks and months during her first year of life.  She had five surgeries within the first 15 months to fix her heart and address her respiratory and swallowing problems.  Thanks to the wonderful medical professionals at Women and Children’s Hospital, Abby has been healthy and hospital-free since she was 15 months old!! 

Abby continues to be followed by her many doctors at Women and Children’s Hospital. During her three years of life, she has been seen by Cardiology, Ophthalmology, Orthopedics, ENT, Audiology, Genetics, and Feeding Clinic.  Abby also has OT and Speech visits once a month to help her to improve with her feeding skills.   

Abby has made tremendous strides both medically and developmentally.  She attends St. Mary’s School for the Deaf, where she is learning how to communicate via a Total Communication approach (spoken and sign language).  She is a bright little girl who is always happy and eager to learn.  One of her teachers gave her the nickname “Amazing Abigail”.  She truly is amazing when you think of how far she has come in such a short time.

ZOE SZCZEPANSKI -
BORNHAVA

Zoe Szczepanski was born June 30, 2003. She is a happy, loving, beautiful 4 ½ year old. She attends Bornhava Specialized Preschool program. Zoe was originally diagnosed with microcephely as an infant. Zoe now is diagnosed as a preschooler with disability that exhibits overall delays in all areas of development. She receives occupational therapy, physical therapy, speech and language therapy and Special Education services all through Bornhava. 

Zoe was first diagnosed with severe motor delays by her Pediatrician Dr. Michael Aronica through Women’s and Children’s Hospital at 8 months old. At that time she was not rolling over, not crawling, and not sitting up and unable to grasp her own bottle or other toys. She started Early intervention services through Bornhava Specialized Preschool, where our journey of hope began. Over the years we have utilized Women’s and Children’s Hospital. Zoe has been seen by a developmental specialist, Dr. Kevin Senn through the Robert Warner M.D Center For Children With Special Needs. She also has had genetic testing, seizure testing and goes to the dental clinic at Women’s and Children’s Hospital.  

Today Zoe is ~ healthy, happy, thriving 4 ½ year old who can run, jump. and pedal a bicycle. She is starting to use many words and some sign language to express herself. She attends Moving Miracles Dance School. She shouts “yeah, yeah” when we pull into the parking lot. Zoe also attends swim therapy at the Robert Warner Rehab Center and she loves it!  

She lives at home in Kenmore with her morn, dad, 16 year old brother, Taylor and her 11 year old sister, Talia. Zoe loves to wrestle and throw the football with her brother Taylor. She loves to sing songs, draw and spend time with her older sister Talia.  

We truly are blessed to have such a strong community of support by all of Zoe’s doctors, nurses, teachers and especially therapists, who have poured so much of themselves into her life to help her to be the best she can he. We have so much hope and faith that our little Zoe will continue to amaze us with her determination and strength.

KALYSSA WILSON -
YMCA CHALLENGER - BATAVIA

“ My name is Kalyssa Willson and I am in the 7 ^th grade at Attica Middle School. Some of my hobbies are sports, collecting build-a-bears, watching TV and movies, playing Barbie dolls, Polly pockets and Bratz dolls. I also enjoy listening to music, talking on the phone, coloring, camping, and shopping. The people that are in my family are my sisters Krysten, Shalayne and Laycee and my brothers Matthew, Travis and Adam. My parents names are Billy and Tarynn. l have three pets; two are hamsters and one is a dog and their names are squeaks, Hammy and Tucker. I attend ST. Luke Episcopal Church in Attica and involved in many activities.” 

JORDAN ZAK -
CRADLE BEACH

Jordan Zak was born on October 7, 1994. She is a thoughtful, smiley 11 year old. Jordan was born 9 weeks premature, along with twin sister Rachel. At 4 weeks old she was diagnosed with PVL (pereventricular leukamalasia). For the first 2 years she was seen at the Robert Warner Rehabilitation Center. That’s when she was diagnosed with Cerebral Palsy. 

Jordan is also seen at Women & Children’s Hospital clinics which include, Neurology for her seizure disorder, GI clinic for reflux and orthopedic clinic. It’s wonderful for her to have such an excellent hospital so close to home. 

For the past 2 summers Jordan has enjoyed the many opportunities offered at Cradle Beach. She especially loves waking up early and going to the polar bear swim. The people at Cradle Beach are a rare caring group of individuals, which we truly are grateful for. They take care of our Jordan like family. 

Some of Jordan’s interests include going to Girl Scouts (troop739), playing with sisters Rachel and Taylor. She also enjoys swimming at the YMCA. Jordan loves listening to music, art, and of course shopping with her Poppy. She is currently going to school at Northwood Elementary in West Seneca, which she loves.

This page last modified on Tuesday, July 01, 2008

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Please call us at (716) 854-7577 or e-mail us at: vcstaff@buffnet.net

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