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Story #9 – “Kara”

Lunch and recess, two of any 1st graders favorite things in school. Kara Kenney, daughter of ROCK FOR CHOP founder Cholly Kenney, recently began school as a fully integrated 1st grader. NBC10 Philadelphia News ran coverage of Kara’s story which highlights her acceptance into a fully inclusive 1st grade program at a local Philadelphia area elementary school and proof as to how similar we all are. One of the first students with Down syndrome to be mainstreamed into her school, Kara faces the same struggles that any normal 1st grader faces. She is growing tremendously and she is a beacon of hope for all individuals who have Down syndrome or raise loved ones born with Trisomy 21. “Don’t look at the diagnosis, look at her as a child and just a child.” Watch the full video at NBC10 Philadelphia.

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Story #8 – “Sara”

Sara’s 13th birthday is on June 5th.  As I reflect over the last 13 years, it is hard to identify one thing to share, but I would have to say that the single most constant gift that Sara has given to us and to everyone she meets, is her unwavering love for all people.  She is extremely friendly, introduces herself (and me) to strangers in the supermarket line, at the donut store, at her brother’s baseball games, and just about everywhere she goes.  Sara leaves a happy trail of smiles behind her, as she engages these folks in conversation.  Sara gives of herself freely, without calculating what she will get in return from her friends, school acquaintances, dance partners, and teammates.  She has an uncanny ability to appreciate some of the very simple things in life, beautiful sunsets, an ice cream cone, colorful flowers, and says “Mom, I’m so lucky,” to which I respond, “yes, Sara you are lucky, and so am I!” Read More

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Story #7 – “Joe”

As I enter middle age, I am learning to cope with the loss of my youth, the aging of my parents and the growing up of my babies. Children with Trisomy 21 will face these same struggles, and more. Trisomy 21 causes premature aging. This means they have the physical changes of aging up to 30 years ahead of the general population. Alzheimer’s is three to five times more prevalent in the Trisomy 21 population. Sadly, many with Down syndrome don’t seem to have the early memory loss of typical Alzheimer’s and so it goes undiagnosed until it is advanced and can no longer be treated with current medications. The long decline of Alzheimer’s is often shortened for those with Trisomy 21. The typical eight to ten years from diagnosis to death in the general population can be as quick as a year or two for those with Trisomy 21, heightening the sadness for families as their loved one quickly slips away. Read More

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Story #6 – “David”

My son David is a high school football player. He’s stocky and strong, very social and respected by his peers. David also happens to have Down syndrome.

Our neighbor always told him that he was “built to play football.” As David’s transition to ninth grade and the local high school approached, I asked him if he would like to try out for the football team. Read More

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Story #5 – “Logan”

Ray and I had been married for 5 years and our daughter Kayla was almost 2 years old in December of 2000 when Logan was born.  I had a normal pregnancy for me, Logan was born at 35 weeks but for me this was normal as Kayla was also born at 35 weeks.  He had some mild jaundice but was happy and healthy.  When we left the hospital 3 days later with our little bundle, they had told us they wanted to do some genetic testing.  The nurses had picked up some minor traits of Down syndrome but it would take 7 days to get the blood test back to confirm.  We received the call on Christmas eve eve (Dec. 23) that they had counted and confirmed Logan had Trisomy 21.  I remember a lot of feelings but the one that kept me going was just looking at Logan and thinking to myself that really nothing had changed from that 2 minute phone call; he is still our son and all we have to do is love him. Read More

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Story #4 – “Justin”

In the Spring of 2000, I was given the opportunity to participate in an adapted Physical Education Swim class. Two days a week, an Elementary class of students with Down syndrome would come to the University’s pool for swimming lessons. I was a Special Education major and at this point in my schooling had very little hands on experience. I was given the privilege of working with Justin. Justin was a five-year-old boy who had Down syndrome. He was as cute as could be, with dirty blond hair and light blue eyes. His verbal communication was limited but it was not difficult to figure out what he wanted to tell you. His facial expressions presented such emotion that just by looking at him you could determine his mood and even his thoughts. Read More

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Story #3 – “Rosie”

Our family was blessed with Rosie. Although it has been 9 years since she departed this life, It still brings a smile to my face to think of her or even say her name.

My father was the second oldest of 13 children. Aunt Rosie was the 12th child born into the family. Rosie was born before the awareness, education and early intervention of Down syndrome like today. Read More

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Story #2 – “Luke”

I still vividly remember the night my brother Luke was born.  I was 13 and my sister was 7.  We walked into the hospital room and I remember it being very quiet.  I could tell that something had happened, something not expected.  My parents had Brooke and I sit on the bed and they told us, “This is your brother Luke.  He has down syndrome, and a hole in his heart.”  I remember thoughts just swirling in my head, too many questions that I did not know if there were answers to.  Then I saw him – the cutest little guy ever, and held him for the first time.  At that moment I had a sense that everything was going to be okay. It is now 16 years later, and Luke is more than just okay!  Luke is a very passionate person, and there are many things in life that he loves – rock music, his electric drum set, guitars, girls, pretzels, Tastycake cookie bars from Wawa, the library, and more than anything else, he adores my two pugs, Winston and Clementine. To hear him tell it, they are his best friends in the whole world. Read More

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Story #1 – “Brenna”

We like to think that June 27, 2008 is the day our lives began. It was the day we officially became parents, and so many things were about to be brand new to us, especially our Brenna Marie. As a planner, I felt as prepared as I ever could be, especially since Brenna’s birth was a scheduled c-section due to her being breech. However, we certainly weren’t prepared to hear the words of the nurse practitioner as I laid in recovery in the middle of the hospital’s hallway…”Based on some physical characteristics I observed on your baby, I believe she has Down syndrome, are you familiar with that?” Never mind the poor bedside manner in which the news was delivered to us, but there’s no worse feeling than as if a bomb was just dropped on you! Sure, we had heard of Down syndrome, but did we have any clue what we were about to face? Absolutely not! What we did know, was that Brenna was ours, and there was no turning back, that day, or ever. Read More