Meet The Ukenas

 

 

Paula and Jeremy Ukena were married in 1989 and were blessed with 3 children. Paul is 23 and graduated in June 2014 from Utica College with a magna cum laude degree in Sociology and Anthropology. Kieffer is in his Senior year at Proctor High School, hoping to go into advertising and design in the Fall. Kyrie is 8 years old , in 3rd grade at Jones School.  Paula is a Home Technician concentrating on her advocacy for children with a disability, primarily Down syndrome, to improve their faces in the national media. Jeremy is Proctor High School's Orchestra music teacher, along with playing 'cello with the Saranac String Quartet and String Bass with Steve Falvo's Easy Money Big Band.

 

When Kyrie was first born, Jeremy held her in his arms to give

her oxygen and something came over him telling him that

Kyrie had Down syndrome. Without saying anything, he handed

over their beautiful baby to his wife.  Paula

held her and said immediately to the doctors that she believed

Kyrie had Down syndrome.  The doctors could not say and

gave her confidence that Kyrie didn't. It took 3 weeks for our

pediatrician to tell us that Kyrie indeed had the extra

chromosome. 

 

Kyrie enjoys singing, dancing, horseback riding, swimming,

modeling, and runway fashion shows.  Kyrie started modeling

in 2006 with a contest for Babytalk Magazine, she has been to

a "go see" for Nostrums catalog, she was published in the 2013

Girl Scout  catalog as a daisy scout, The 2014 Differently-abled

Toys R Us Catalogue, and September 2014 Parent's Magazine

in the Baby Bloopers Section.

 

 Jeremy and Paula want Down syndrome faces to be seen as people that are beautiful and can do anything typical kids and adults can do. They wear all the clothing that typical kids wear and should be advertised likewise. Kyrie brings a song to all of our hearts!

 

Thank you Paula and Jeremy for sharing your family story with us and for all the work you do to raise awareness and acceptance of people with Down syndrome!

 

 

 

 

  

Meet The Evangelists

Meet The Savickis

 

Jason and I were both born and raised in Rome, NY and have lived here our entire lives.  We met while working for the City of Rome Recreation Department during our summer breaks.   Eight years later, in October 2001, we got married.

 

Jason is the Assistant Superintendent, Pre-K through 4 for the Rome City School District.  I am a first grade teacher at Stokes Elementary in Rome.   We both came from similar backgrounds.  Jason’s father was a principal in Rome, and my father was a business teacher in Rome.  So education seemed a likely path for both of us!

 

In 2005, our first son, Owen was born.  He will be entering 4th grade this year.  Four years later, in 2009, we were blessed with the birth of our second son, Dominic.  A few days after his birth, we were informed that Dominic had some of the characteristics of Down syndrome.  The doctor ordered blood tests to determine if this was the case.  About ten days later we got the call, informing us the genetic testing showed he in fact did have Down syndrome. Dominic was fortunate not to have any of the health problems that can come along with Down syndrome, so that was a relief to us in those first few weeks and months.  Any parent that has received this diagnosis knows the shock and feeling of helplessness when first hearing this news.  It took time to come to terms with this life changing news.  However, every day we spent with Dominic reassured us that everything would be fine.  We realized raising Dominic was no different than raising Owen!   Although our path took a different turn, we now truly understand what it means when someone says everything happens for a reason.  Dominic is a great young man who brings joy to everyone he meets.  His loving smile and personality has made him a popular man around the town!  We are proud to be known as “Dominic’s parents”!

 

Dominic will be entering a regular education Kindergarten class this fall and will be fully included with the help of his own teacher assistant.  This seemed like the logical path since he attended a regular education nursery school for three years and did very well there.  As educators, we feel strongly about Dominic being included with his peers in the least restrictive environment.  We have high expectations for Dominic’s social development as well as his academic growth. In a regular education setting Dominic has the opportunity to observe his classmates model appropriate grade level behaviors under the guidance of an excellent Kindergarten teacher. Not only do we believe this is important for Dominic, but we feel this opportunity should be offered to any child with special needs.  Navigating through the educational system with a child with special needs is not easy for any parent.  The families in the 21 Club are lucky to have each other to help guide them through this journey!

 

With the start of the school year here, I am grateful that both boys will be with me at Stokes!  I am fortunate that I am there to watch and support them in everything they do (the good….and bad!!!) each and every day! We wish all the families a wonderful start to the new school year!

 

 

 

 

 

  

My name is Christine Savicki and I am honored to share our journey with you. 

 

My husband, Randy, and I were both born and raised in Clinton, NY. We met through a mutual friend in high school, fell in love and married 11 years later. Randy is a financial advisor for Americu Credit Union, and I am a stay at home mom. I also work part-time as an ambassador for Plexus Worldwide. 

After trying to make his way out for 4 long days, our amazing little Brody was born on October 2, 2008. But, our “perfect” day was shattered by those 2 simple words….Down syndrome. The words and emotions that followed were frightening and overwhelming to say the least; “Open Heart Surgery, AVSD, Single Crease on Palm, Large Space between Toes, Early Intervention, Therapy, Medicaid, Developmental Delays, Inclusion”  We were so scared.  We felt, despite what we were being told by family, friends and doctors, that it was NEVER going to be OK.  

 

In addition to his diagnosis of Down syndrome, there were other health problems that were present at birth. Brody had life threateningly low oxygen and platelet levels, as well congenital heart defect, AVSD. He was immediately transported to Crouse Hospital in Syracuse where he spent 2 weeks showing us what an amazing little fighter he truly is!  

 

It was a long first few weeks, but soon our hearts opened up, the tears turned to smiles.  Acceptance set in.  Almost 6 months later, heart surgery on our beautiful little baby took place, and soon we were back home picking up with our lives.  And now, 5 ½ years later, we have the life we always dreamt of!   Brody has shown us that individuals with Down syndrome are "more alike than different", and that with our high expectations and his hard work, the sky is the limit!  We have come to know that “More is Better” and we wouldn’t trade that extra chromosome for all of the money in the world.  

Today, Brody is just like any other little boy his age, despite having to work a bit harder to keep up. He enjoys playing with his friends, riding his 4-wheeler and bike, reading and watching his favorite tv show, The Imagination Movers. This fall Brody will start kindergarten at Myles Elementary School in New Hartford, where he will be fully included in a regular classroom with his typical peers.

 

In 2009, the first annual Brody's Buddy Ride took place, and The Brody Savicki Foundation, Inc. was established. Brody’s BUDDY™ Ride is a 63 mile bike ride signifying Trisomy-21. The extra chromosome which defines Down syndrome is why we feel that, as opposed to the typical 2, is better…”More is Better”!  The ride and the event which follows was established to raise awareness for Down syndrome and is the primary way the Foundation is funded. The Brody Savicki Foundation’s purpose is to continue to educate and raise community awareness about Down syndrome, to assist families financially in regards to medical needs of individuals with Down syndrome, and to provide activities, scholarships and other events for individuals with Down syndrome. We believe that every individual with Down syndrome should be able to chase and achieve their dreams, and our goal is to  be able to assist in any way possible. Down syndrome is a disability:  a disability that does not define one, and one that does not stand in one’s way.

 

This year, Brody's Buddy Ride will take place on Saturday 8/16 in Clinton, NY. For more event information or for info on the Foundation and how donations are used through your the year, please visit our website at www.brodysbuddyride.org

 

Thank you for allowing us to share our story with you. We feel so blessed to call Brody our son, and blessed that he brought us into this beautiful world of Down syndrome!   We are grateful for all

of the wonderful individuals and families we have met and learned from along the way!  

 

 

 

 

  

Meet The Rodman/Legacy Family

Hello everyone! My name is Cassidy Rodman and my fiancé is Cory Legacy.  I grew up on a dairy farm in Earlville, New York.  I work part time at Farm Credit East in Sangerfield.  Cory works at Fred Burrows Trucking and Excavating in Whitesboro and he has always been a very hard worker.  He also likes to help out on a farm just down the road. We both love the country life and we actually met at Albee’s Pond hops in the summer of 2003.  Just in case you were wondering what the “pond hops” are, they consist of snowmobiles racing across a pond.  It was literally love at first sight when we met, and we have been together ever since.

 

Cory and I have, what we consider, two babies in our house.  Our original baby is our dog Duke. We rescued Duke as a puppy on Valentine’s Day in 2005.  Duke has always been right by our side and we would seriously be lost without him.  After having Duke for some time I couldn’t wait to start a family. I wanted so much to be a mommy, but I guess God was telling me to be more patient because we tried for two years before we found out we were expecting.  We were beyond excited and our family was too.  I loved being pregnant, but at 41 weeks, we were anxious to meet our precious baby girl. 

 

On January 12th, 2013, Claire Jordan Legacy was born.  It was the happiest day of my life.  Since I had Claire by C-section I got to see her for a short time right after the procedure. I was reassured that she would be with me in no time when I went back to my room. I waited and waited. I kept calling the front desk. The nurse said that the doctors were just checking her over. I knew something wasn’t right. After two hours I finally had my baby in my arms followed by the doctor telling us that she had all the signs for Down syndrome.  Looking back, I feel like we took the news pretty well after the initial shock.  There were days when I felt very overwhelmed. I didn’t know a lot about Down syndrome and I wanted to do everything right.

 

Things were going great with Claire, her therapies were in place, and she actually wowed everyone by rolling from her back to her tummy at 3 months!  At 5 ½ months I knew that something wasn’t quite right when she started making these jerky movements. At first I put them off, but then soon got worse and in clusters. They were happening every day and I started to video tape them.  We went to her doctor’s office and they assured me that the movements were normal.  I tried to put them off, but couldn’t. These clusters were now followed with a cry. I finally went the ER in Syracuse and showed the doctors there my videos.  They also said that the jerks were normal.  That day they did an x-ray of her belly and told me that she was just constipated.  I felt relieved, but they still went on.  A week or so later, I took her again to Syracuse where we got to speak with a neurologist.  He admitted her right away and took one look at my videos and said, “these are infantile spasms.”  That day an EEG and MRI were ordered.  I was relieved. I thought, this is good, there is finally an answer and all we have to do is get medicine for this and they’ll be gone.  Not the case.

 

Claire has been on three different seizure medications, three six week treatments of steroid injections, and three other medications to suppress side effects from seizure meds since she was 7 months old.  She has had numerous EEGs which are always very disorganized. Claire is now 18 months and she has been through so much.  Infantile spasms stop development and cause regression.  She has had extended periods of not grasping, not smiling, not rolling, losing head control, and even not making any movements at all. Infantile spasms are devastating and we are told that because she has Down syndrome it is the underlying cause of this awful type of epilepsy.

 

It’s been a rough first year for Claire but right now we are happy to say that she is seizure free since May 18, 2014.  She is still on many medications but she is making amazing strides.  Her smile is back and it the best thing in the whole entire world!  Claire is also giggling and rolling all over the place! Her head control is really good and we hope everything keeps progressing. Her favorite book is "Brave Little Deer," she likes to go for walks, go swimming, and her favorite song is "Old McDonald" because I sing it to her all time.  We have a very big family that gives Claire so much love.  She is never short of kisses and hugs.  Claire truly touches everyone that meets her with her sweet funny personality. 

 

We are so thankful for having our family and friends to support us as well as the 21 Club. We are so proud of Claire and she has taught us so much. I appreciate everything that The 21 Club has done for us, especially just emotional support. When you are a new mom with a child with DS you often feel lost, but meeting and talking with other moms makes it so much better. Thank you for reading our story!

 

Thank you Cassidy for sharing your journey!  For more information on infantile spasms, click HERE.

 

 

 

  

Meet The Gragos

My name is Kari Grago and my husband is Joe. We were both born and raised in Rome, NY. We met in 2006 in gym class. We have been together for 8 years and married for 2 years. I am currently a stay at home mom and I enjoy every minute of being here with my son, Joseph “JJ.”  Joe works for his father's online advertising company.

 

While I was pregnant with JJ, the OBGYN did a blood test and at that time they said there was a 1 in 250 chance my child could have Down syndrome, but not to worry because a lot of people get
these results and have perfectly healthy babies. They asked us if we would like to do another test, but they said there was a small percent chance of miscarriage. We decided we were having the baby regardless of the outcome.  Skip ahead a few months to when I had the baby, a few hours
after delivery the pediatrician came into the room and told us that JJ had all the signs of Down syndrome. At this point we didn't know what to think we were scared, worried and unsure what the future would bring.

Joseph Grago, Jr. aka "JJ" was born July 10, 2013.  Right from the start we thought it was going to be rough. The hospital told us JJ was deaf and he had a heart murmur. After two more hearing tests we learned that his hearing is almost perfect.  At about a month old, JJ had an echocardiogram done on his heart that revealed we needed to contact a cardiologist. About a month later we met Dr. Frank Smith who explained that JJ would need open heart surgery.

 
At five months old JJ went in for the operation and did great. Very shortly after we got home, we noticed a significant change in his behavior. He rapidly gained weight, which he didn't do the first five months of his life. JJ receives both physical and speech therapy and will be starting occupational therapy very soon. He loves his therapists very much as they are close like family. JJ loves to roll around on the floor and get into everything that he can, we have to keep most cords hidden or unplugged because he loves to roll to them and play.

At not even 1 year old, JJ has made a huge impact on our families. Every time someone met/meets JJ they instantly fall in love and want to know more about him and his story. Before JJ, neither of our families knew much about Down syndrome. Since we had JJ, we have met so many new families and joined an amazing Down syndrome support group. With events like the Buddy Walk, and Buddy Ride our families became more familiar and wanted to learn more about individuals with Down syndrome.

 

Thank you for sharing your story with The 21 Club!  We are amazed by all you have accomplished in one year!

 

 

  

Meet The Pociechas

 

Hello!  My name is Magdalena Pociecha and my husband is Marian. From our different names, you can infer we are not from America. We are indeed from Poland, and that’s where my husband and I have met! I met my husband when I was a Physical Therapist student volunteering to work with a Down syndrome group and at the same time, my husband was a Chaplain for the same group. What a coincidence! 

 

We have three children altogether. Our very first daughter, Dominika, was born on January 6th, 1998, and was expected to be any ordinary baby all throughout the pregnancy. It wasn’t until she was born that she had been diagnosed with Down syndrome. It was certainly unexpected, and we did not know how to prepare for this different nurture. However, we have found that Dominika is certainly the most sweetest and caring individual anyone has ever noticed. Dominika was born in Poland along with her younger sister Zuzanna, who became the biggest blessing in Dominika’s life (her best teacher, therapist and friend forever).

 

Our family has moved to America in the year 2000 when Dominika was 2 ½ years old. This was a big change for our family, but we soon have realized that we have adapted to our new home fairly quickly. I am a registered nurse. Most of my career I spent serving people, and especially those in my heart, people with special needs. Currently, I am employed by CNY DDSOO and I love it. My husband is a pastor at All Saints PNCC on Hickory St. in Rome where we lived nearby. This is when Dominika’s younger brother, Philip, was born. This was a different change to Dominika, and when she was 7 years old, she learned how to take care of her younger brother like any loving sibling would do. In 2008, another change was being created. Our family had decided to build a new home for our large family. In the meantime, a furry friend has joined our family and has become very close with Dominika. It was our new puppy, Maks! Eventually, our family has moved into our new house on Christmas Eve in 2012. We have enjoyed our new house by Lake Delta ever since.

 

Dominika is currently 16 years old and attends Rome Free Academy and AM BOCES. She also enjoys karate and swimming for the Special Olympics. She loves music and dancing and her most desirable dream is to see Selena Gomez at a concert. To add to that, she spares her time to volunteer at church. She has become close friends with everyone in all of her activities. When Dominika was born I thought that “I will never laugh again” – now I can laugh but I never stopped crying because raising a child with a disability is a huge responsibility, but every little step is a little bit of joy. In conclusion, we are proud to say that Down syndrome has no effect on your personality. Dominika has proudly kept up in all of her activities and is certainly no different from everyone else. One extra chromosome will not stop you from doing things that are possible!

 

Thank you for sharing your family's story with us Magda, we are so glad to have you be a part of The 21 Club!

 

 

  

Meet The Klepadlos

 

Hello everyone. My name is Carol Klepadlo. My husband Gene and I met in high school and were married in 1975. We have 2 sons, Steven and Matthew, and daughter, Gina. There was an 11 yr space between Matt and Gina so expecting a baby was quite a surprise to all of us. My obstetrician sent me to SUNY perinatal clinic with a pregnancy symptom that led to tests including an amniocentesis. I was already 7 months pregnant and no diagnosis would have changed anything. It was discovered that Gina had duodenal atresia, and atrial ventricular septal defect and Down syndrome . We had the whole picture prior to birth, which was devastating, very scary but also prepared us somewhat for what was ahead.

 

Gina was born on July 26,1990 at Crouse Hospital and had corrective surgery for the duodenal atresia at 24 hours old and the heart surgery at 9 months old. The first 18 months were medically challenging but Gina showed the same determination then as she has now. UCP has been there for us from the start. Gina attended both infant and preschool with UCP.  She received excellent therapies. We were one of the first families when the Down syndrome awareness group was formed. Gina was in inclusive classrooms in Rome all through elementary school years. All Gina's school years went quite well. She attended and graduated from Rome Free Academy in 2011, which included some time at BOCES and a work study program. Gina was accepted into the Collegeworks program in Rome graduated from there in 2013. A third year was offered at Collegeworks in Sept 2013 and then in November 2013 , she started a job at the Wingate Hotel in Rome, doing housekeeping. She can independently take the Centro bus ( this was a big accomplishment) and loves her job and co workers. Our sons and extended family have always been so loving and supportive.

 

Gina has never been treated differently.  Of course, we have had all the challenges that come with having a child with a disability . Gina is very social, she attended dance in ballet and jazz for 14 years and has been involved in special Olympics for 13 years. She gives her all to anything she tries. We are so proud of our daughter ,Gina , what she has endured, and accomplished and would never trade her for the world.

 

Thank you for giving us the opportunity to know a little more about us and we want everyone to know what wonderful people we have met , thanks to a very special child we call our daughter.

 

Thank you Carol for sharing your family's story and for all you do to support our families.

 

  

Meet The Callaris

My name is Kelly Callari and I am happy to share our family story. Both Paul and I were raised in Utica, New York. Our journey together started in 1992. We met through a mutual friend and dated for 8 years before marrying (Paul says we rushed into things…). We now have been married for 13 years. I am currently a stay at home mommy (the hardest, but by far the most rewarding job I have ever had) Paul works as a letter carrier with the Utica Post Office. I became pregnant at the age of 42, delivering at age 43. At that time my Obstetrician told me I was a high risk for having a child with Down syndrome and I should think about “my options”. The only option, Paul and I agreed, was to have this baby. God chose us to become first time parents at our age for a reason.

 

Angelina Grace was born February 29, 2012. Yes, she was a leap day baby!!! She became very special right from the start. Her name was chosen when we found out we were having a girl. Little did we know how well her name would suit her. Her delivery did not go as expected. After delivery, Angelina was having difficulty breathing and was taken from us that same day and transported to the Neonatal Intensive Care Unit (NICU) in Syracuse. Prior to her transport, the neonatologist in Utica mentioned they were going to test her for Down syndrome also. As you can imagine, after anxiously anticipating her arrival, having our child taken from us was heartbreaking for both of us.  She spent 16 days in the NICU (coming home on her actual expected due date). She was diagnosed with transitional delay and respiratory distress. During many of her tests, it was discovered Angelina had a heart defect and a couple days later it was confirmed Angelina had Down syndrome. All the news was so overwhelming and all we wanted was for her to get strong enough to come home with us. I remember saying to Paul with tears, I don’t want Angelina to be made fun of. All the unknowns we found so scary.

 

What we know now is, that Angelina is a thriving 2 year old, who completes our family. She is a happy, sweet and loving little girl that everyone cannot help but fall in love with. From the beginning, Angelina became her daddy’s “Miss Pretty”.  Angelina loves meatballs and ice cream. She lights up at Barney, loves books, picture cards and pretend play like any two year old. We know she will continue to face challenges, but with patience, faith, love and guidance, we know Angelina will shine! We have been blessed with an angel. We are thankful for the love and support of our families, so many friends, our church parish, awesome Doctors and therapists. We are so fortunate to have an amazing support group to share and learn from each other on this journey. Thank you to The 21 Club of CNY.  I am honored to be a board member and look forward to doing amazing things for our amazing children. Love does not count chromosomes!!!

 

Thank you for all you do Kelly and Paul!  We are so happy you are a part of The 21 Club!

 

 

  

Meet The Hanzalik Pollards

My name is Melissa Hanzalik Pollard and it's my pleasure to share my family story. I was born and raised in Utica, New York and I'm currently a stay at home Mommy.  I met James Pollard Sr. in high school and quickly we became high school sweethearts.  James Sr. also is from Utica, New York and currently employed with Faxton St. Luke's Hospital and soon to be graduating from college as a registered nurse, and then to be a nurse practioner.  We have two children, with one a teenager, and they are the loves of our lives.  On June 24, 2012, Jayden was born.  We were so excited to meet him as we waited 14 years fo have our second child due to fertility problems.  Shortly after Jayden's birth, the pediatric physician entered our room with the news we weren't quite expecting, Jayden has Down syndrome and a heart defect! We were crushed with fear and sadness of the unknown for his future.  The thought of not accepting a child due to a diagnosis was just not an option for us.  We love him more and more each day and he is perfect in every way!  Jayden loves life and has a constant smile on his face.  He also enjoys music very much.  He is quite active and as "normal" as any other child his age.  Of course, we face challenges and will continue to, but, with patience, love and faith, we know he will excel in everything.  Jayden is a true angel and has taught us strength and love in abundance.  We are so blessed to share our story and to be involved in The 21 Club.  We have met such amazing families and take comfort in knowing there are so many just like us and are forever grateful! Down syndrome will not define Jayden and his quote is "I'm Down with Love" and that's exactly what Down syndrome means to us!  

 

Thank you Melissa for sharing your beautiful familiy story and for being a part of our group.  We are so happy for your perspective!

 

 

 

 

  

Meet The Gowers

My name is Lori Gower and I am very much honored to share my family with The 21 Club.  I was raised in Auburn, New York and my husband Terry was raised in Morrisville, New York.  We are both employed by New York State and we met each other while at work.

 

We were married in November of 1989 and settled in Vernon, New York.  We decided on this area because we knew it would be a great community to raise our future and children and the good reputation of the V.V.S. school district.

 

In May of 1991, our first child, Joshua, was born and when I looked at him, he was just perfect.  I was in the hospital five days after the birth of Joshua and my love for him grew stronger each day.  On the day I was being released from the hospital, the doctor told me Joshua had Down syndrome.  The words coming of the doctor's mouth did not matter because my love for Joshua was just as strong after the news he had Down syndrome as it was before.  The doctor told me that we had options, as in giving Joshua up for adoption.  The thought of giving my baby boy away was never an option, as my husband and I both knew he would bring us a lot of happiness and joy in the coming years. 

 

In April of 1993, our second child, Amanda, was born and watching both of our children grow up into the  people they are today has been great joy for my husband and me.  Amanda has grown up to be an amazing young woman who is extremely protective of her brother.

 

As a family, we enjoy traveling, we have been on a cruise to Hawaii, and several trips to Orlando.  Walt Disney World is Joshua's favorite place in the world.  There is not a roller coaster he won't ride.  He is a little daredevil when it comes to amusement park rides.

 

At a very young age, we could see how Amanda would look out for her brother, she was always there helping and encouraging him.  As children, they shared many activities together including gymnastics, soccer, t-ball and swimming lessons.  Amanda taught Joshua many things as they grew up, inlcuding how to do chores. Amanda would always tell people they don't give Joshua enough credit and he would prove them wrong.  Amanda is now 20 years old and a junior at Elmira College where she is majoring in speech pathology, a field she chose because of Joshua.

 

Joshua is now 22 years old.  He graduated from V.V.S. and is currently attending the Ventures program through the ARC.  This program provides Joshua the opportunity to work in the community and volunteer at several local businesses.  Joshua really enjoys working at Jay-K Lumber, the Humane Society, and other area businesses.  Joshua participates in several sports year round through Special Olympics.  The sports Joshua enjoys include swimming, bowling, golf, bocce ball, basketball and horseback riding.

 

We appreciate the Gowers sharing their story with us!

 

 

 

  

Meet The Giffords

Sherry is from Maryland and Dick is from Rome.  They met and were married in Laurel, MD when Dick was stationed at Ft. Meade with the Army.  Since their wedding in 1997, the Giffords have lived in Virginia 3 times, New York 2 times, Florida, Texas (where the boys were born), Minnesota and Kentucky.  They have twin boys Sam and Ray.  Sam has Down syndrome.  Sherry is a substitute teacher for the Rome City School District and volunteer on the Parent Teacher Guild.  Dick is a retired US Army colonel and pilot.

 

The boys go to the same school.  Sam has an aweseome team helping him be successful in general education.  The boys do baseball, basketball, swimming, karate and just joined the Cub Scouts this year. They are very active and Sam likes to do everything his brother does!  Maybe some things even more so.  Sherry tells us that "one thing is for sure, that whatever Sam is doing, he's giving it his all!"  Sherry shared that she read a book once about a family with a similar story and loved one quote so much she put it into her own words: Ray is the son I always wanted and Sam is the son I never knew I wanted! We love them both to "infinity and beyond" and can't imagine them not being in our lives!

 

Like most families, a diagnosis of Down syndrome a week after the boys were born 8 weeks early, left the Giffords scared and devastated.  The life of having twins took over much of their anxieties of Sam having DS and they concentrated on getting what both boys needed to thrive.  They realized Down syndrome isn't devastating at all!  With all the moves when the boys were so young, the Giffords were blessed to meet so many wonderful people that they would not have otherwise met if it weren't for having Down syndrome in their lives.  The Giffords shared that: "We are happy to be a part of The 21 Club and appreciate all it does!"

 

We are so happy to have the Giffords!

 

 

 

  

Meet The Denyes Family

Steve Denyes tells us about his family and experience with Down syndrome:

 

It's my pleasure to introduce our family, and I wish to thank The 21 Club for this wonderful opportunity to share with other families.  It is a forum by which all of us can benefit from our experiences and yours.  Hopefully, we can learn and help each other transition through the various stages in our child's life.

 

My name is Stephen Denyes and I married my wife Hazel in August of 1980.  I currently work at Divine Brothers as a Sales Manager and Hazel works part-time for a Mental Health Therapist.  Our first son, Michael, was born in November of 1987 and is currently working in the field of Cyber Forensics in Maryland.  Our son Jamie was born in March of 1990.  When Jamie was born, we were informed by our Doctor that our son had Down syndrome.  We knew absolutely nothing about our child's diagnosis and we were totally unprepared and somewhat concerned about our parental abilities in this special situation.  Today, we thank God for the child we have.  I believe many parents find so many wonderful things out about themselves when they have a special son or daughter in their lives.  It takes special people to raise special children.   Our son Jamie has provided my wife and me with many emotional moments in our life.  We have experienced much frustration throughout Jamie's school years.  We learned quite early that we had to get involved in all aspects of our son's curriculum; you had to develop a tough skin; you had to speak what was on your mind, and most importantly, you had to stand by your beliefs and your convictions.  I had the privilege of being a parent/family advocate for the Utica School District for many years.  I think the majority of Jamie's teachers were very helpful and considerate.  Jamie was involved in Inclusion from Kindergarten to his freshman year in High School.  My wife and I enjoyed interacting with our son in many of his activities.  His favorite teacher was Patty Scaramella at Proctor High School.  Mrs. Scaramella was the choir teacher and Jamie enjoyed her wonderful leadership for 4 great years. Jamie also attended his Senior Ball and the Winter Semi.  He asked his date to the Senior Ball before telling us, which was  a nice surprise.  While attending Proctor, he was involved with the Best Buddies which is a great organization that buddies up with a peer during the School year and they participate in many functions together.  When Jamie graduated from Proctor, he led his entire senior class into the Utica Memorial Auditorium for their graduation ceremonies.  You can imagine how proud we felt at that moment.

 

Today, Jamie is 23 years old, and he has developed into a fine young man.  Jamie participates in Special Olympics.  He does Swimming, Golf, Horseback Riding,  Bowling, and Cross Country Skiing.  He also works out in the gym twice a week.  He also goes to a book club at the public Library.  He attends Ventures, and ARC program that provides volunteers to many worthwhile businesses throughout the Mohawk Valley.  He has many favorite places where he volunteers.  He likes St. Luke's Hospital, the Steven Swan Humane Society, the Kirkland Library and the Heritage Home.   Ventures also provide Jamie with skills in math, money and they also have a reading group.  We are very willing to share any of our experiences with you.  You are more than welcome to contact us through The 21 Club.

 

Thank you Denyes family for sharing your story and time with us!

 

 

 

 

 

Meet The Carpenters

Mike and Dawn Carpenter met online and began corresponding by e-mail, and eventually met in person.  At the time, Mike was in Boston and Dawn lived in Utica.  All of the travelling eventually took its toll and the couple were married in 2006 and decided to settle in the Canastota area because of how close Dawn was with her family.  Mike is a engineer and Dawn is a special education teacher with over 20 years experience working with children with special needs.

 

Before long, Mike and Dawn were expecting a baby!  Dawn shares that "Mike and I were shocked to learn that we were pregnant! At 43, I thought my opportunity to be a Mom had passed."  They had Mason, who has Down syndrome!

 

Dawn tells us that "The thought that we might have a child with Down syndrome did cross my mind, but we were willing to accept whatever challenges God would present.  Mike and I are accustomed to facing challenges.  Parenthood is yet another one."  Mike and Dawn have a unique perspective on having a child with Down syndrome since they both have cerebral palsy.  "Given the fact that we both have disabilities, we have a great deal of experience dealing with the challenges that Mason might face in his life, medically, educationally, socially or otherwise.  We have observed our parents dealing with certain issues as well, which has given us the benefit of their perspective.  We have learned from them."

 

Mason is now five years old, and is in Kindergarten.  He attends an integrated program at Peterboro Street Elementary School in Canastota.  Mason loves listening to music, singing, and dancing.  He also loves going outside with his Daddy, swimming and playing ball.  He recently discovered how much fun it is to help Daddy mow the lawn!

 

Dawn tells us that "experience as a teacher has prepared me to be Mason's mom.  We encourage Mason to experience life, try new things, and just be himself, a happy go lucky five year old.  We teach him that he can do whatever he puts his mind to, and although it might take him a little longer to arrive, he will get there with hard work and perserverance."

 

Well said! Thank you Dawn and Mike for sharing your story with us!

 

 

Meet The Bishops

Meet the Bishop Family!  Here's Allison to tell you about herself and her wonderful family:

 

My name is Allison Bishop. I am 19 years old and I will be 20 on October 30! I go to MVCC for a program called College Works. I love going there everyday.  It is fun to learn, meet new people there and be independent.  The campus is amazing!  My favorite thing is spending time with my family, boyfriend and friends.  They do everything for me and I love them very much.  Now that my sister (Kelly) is away at college, I take care of her puppy.  I walk him every morning and as soon as I get home.  I make sure he has food and water everydy.  He is so much fun to play with and snuggle.  I love going on my iPad to watch music videos and listen to music. I just auditioned for a part in a movie in New York City.  I hope I get it!   I love the month of October because it is my birthday and The Buddy Walk!  I was almost 2 years old when I first started the Buddy Walk.  I love that my friends and family come and support me and my friends with Down syndrome.  I am lucky because having an extra chromosome means I get to be extra special.  My mom always tells me that!  I want to be a teacher like my mom (Karen) because I want to help kids like so many of my amazing teachers have helped me.  I work hard and I never give up.

 

We are so appreciative that Allison shared her story with us! 

 

 

Meet The McManus Family

Instead of love at first sight, it was love at first words for Heidi and Sam McManus.  Sam, originally from Philadelphia but attending college in Tennessee, and Heidi, a native of Newport, NY, met through an online band fan list.  After a long distance relationship, Sam made the move to Newport and the couple married in May of 2003. 

 

The road to children was bumpy.  After other fertility treatments failed, a first round of in-vitro fertilization brought them their daughter Alexa, born in 2006.  Later rounds were unsuccessful.  A decision to try one final IVF cycle gave them their daughter Madeline, born on Christmas Eve 2008.  Her diagnosis of Down syndrome was a surprise. 

 

Heidi says "The first time they handed me Maddie I knew something wasn't right.  I saw the folds at the inside corners of her eyes- what I now know to be epicanthal folds- and my heart immediately sank.  I just wanted to go back two minutes, when I thought everything was fine.  I  had no idea then just how perfectly happy I would be with this glorious little girl.  She is the best Christmas gift ever!" 

 

Today Madeline is a very active 4-year-old.  She attends an integrated preschool program at the Upstate Cerbral Palsy Armory Campus.  Her favorite activities include swimming, dancing, singing, and imitating her big sister.

 

Sam says, "You know, I never envisioned this life, but I wouldn't change one little thing."   So true!  We are so thankful to have the McManus family in The 21 Club!

 

 

Meet The Hoovers

Michele Hoover works for Catholic Charities as program manager and helps arrange interim placements for infants from birth until adoption.  On October 24, 2007, Michele received a phone call from a mom on her way to the hospital to give birth.  The mom wanted to arrange for an adoption.  The programs' interim care providers all had infants in their care at that time, so Michele brought the newborn baby, named Sarah, home with her. Sarah has Down syndrome. A few weeks after she was born, Sarah started to have trouble breathing. Michele and her daughter rushed Sarah to the hospital where she stopped breathing moments after she arrived. They were taken by ambulance to Syracuse. Michele spent the next seven days with Sarah at the hospital.  After being released from the hospital, Sarah left Michele's care and was placed with an interim care provider.  Michele tells us that "I went home and felt empty. Something was missing." Michele spoke with her daughters, Kelly and Emily, who knew Michele couldn't let Sarah go.  Michele recognized that as an older parent, she may not always be around to take care of Sarah. But, Michele's family assured her they would always take care of Sarah and Sarah would always have all the love and support she needed! Eighteen months later, the adoption was official! Michele looks back on that hospital stay as forever changing her life for the better.  "It has made my relationship with my daughters stronger and has helped me to become a better person."

 

Michele and Sarah came to our group after meeting the Kotary family. Today, Sarah has some medical issues, but is thriving! She is fully included in her kindergarten classroom in the Holland Patent School District.  Michele tells us that Sarah "walks the halls and everyone calls out to her.  She gives hugs and high fives on her way to the class. She is right where she is supposed to be." We couldn't agree more! We love having the Hoovers as a part of our 21 Club!

 

 

 

Meet The Delias

Heather and Mike are both Utica natives who currently live in Whitesboro.  They met while attending Proctor High School in Utica but were reintroduced later on by a mutual friend.  They were in a long distance relationship before getting married six years ago.  Now, both Mike and Heather are teachers for the Utica City School District.  Mike is a middle school health education teacher at John F. Kennedy and also coaches both football and basketball for the district.  Heather is a grade 4 inclusion teacher at Thomas Jefferson Elementary.  Four years ago, Mike and Heather were expecting twins Michael and Ellasandra, when they found out that Michael had Down syndrome.  Heather shared with us that “whenever I think about my prenatal diagnosis, I think how I couldn’t imagine my life with Down syndrome, and now, I can’t imagine a life without it!”  The twins are now 3 years old and both attend New Hartford Presbyterian Preschool and enjoy each other’s company in the inclusive classroom!   Eight months ago, the Delias welcomed their third child, Mason, to their family.  Heather says that Mason “gets lots of love from his big brother and sister!”  We are so happy the Delias are a part of The 21 Club!

 

E-mail us Here

The 21 Club of CNY, Inc.

PO Box 264​

Washington Mills, NY 13479

Check Out Our Facebook Page

  • YouTube Social  Icon
  • Instagram Social Icon
This site was designed with the
.com
website builder. Create your website today.
Start Now