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Our Site... A Family's Story...

Here families talk about Tay-Sachs disease(12 minutes long - click play below).

Isabel's Story

Isabel was born in Buenos Aires on February of 2009. Until the age of two Isabel was a healthy little girl. She had the life that any other child could have: school, little friends at park, holidays and trips to Spain to visit her family. And always a big smile on her face...

Read Isabel's Story.

Lexi's Story

Our daughter Lexi was born on March 30, 2011. She was born in Junction City, Kansas right outside of Fort Riley. I am in the army so.....

Read Lexi's Story.

Nathan's Story

Our son Nathan Harney is almost 17 months old. He is a wonderful, happy baby who has beautiful blue eyes, a huge personality, and is the light of our lives. He is a gentle soul that we have been blessed with......

Read Nathan's Story.

Karin's Story

My sisters and I had what seemed to be a normal up bringing in Southwestern, Ohio to a set of parents who were regular too.....

Read Karin's Story.

Isaiah's Story

On March 16, 2007, Isaiah came into the world at 9:41 PM weighing 8 lbs. 6 oz. he was greeted by his daddy, Grandma Lisa, and Great Aunt Chaundra.

Read Isaiah's Story.

Rachaeli's Story

Rachaeli entered this world with her eyes open wide; God delivered her to us shortly before the start of the Sabbath on Friday October 25, 2002. It was a perfect delivery, following a perfect pregnancy. Rachaeli was absolutely captivating.

Read Rachaeli's Story.

Kaiden's Story

Kaiden was born December 20, 2006. He was my beautiful blue eye, blond hair angel. He was the best baby any parents could ask for. He smiled constantly and barely cried. I would tell my Mother all the time that he was my "special little man".......

Read Kaiden's Story.

Elise's "Baby Elise" Story

Elise was born December 1, 2004 in Santa Maria, California. She was an absolutely perfect baby with an easy pregnancy. We never imagined we could love someone as much as we love Elise. The next 6 months were the happiest months of our lives......

Read Elise's Story.

Cole's Story

Travis Cole Snellgrove was born to Wendi and Travis on April 12th, 2004. He was born with no problems and was home the next day. He was a very good baby and we had no problems with him for the first month, then he started having trouble.....

Read Cole's Story.

DJ's Story

Dylan James Manning (commonly referred to as “DJ”) was born on Thanksgiving Day, November 22, 2001. Dylan’s arrival was a long awaited event for his parents, Brian and Sherri of Atglen, Pennsylvania. Although Dylan was anxious to arrive almost four weeks early, he was not quick to reach his milestones. Doctors naturally gave him a little extra time to reach things like crawling and rolling over due to his prematurity.

But it didn’t take long to figure out that something serious was wrong with Dylan....

Read DJ's Story.

Amelia's Story

Amelia was born September 29, 2006 and was a sweet, easy-going baby right from the start. Her baby book filled up as it should have – first smile at four weeks, rolled over at four months, babbled at five months.

But from six to nine months, she got stuck in a holding pattern. She was still reaching milestones, but at a much slower rate. At nine months she would roll across the room to get to a toy, and she could almost get into the crawling position, so we figured she would eventually get it.

Little did we know that Amelia had reached her developmental peak and would regress from then on.

Read Amelia's Story.

Charles' Story

Charles Lee Anderson was born on February 26, 2006 to Bryce and Amy Anderson. His sister Anna was 14 and brother Ben was 11. Charles Lee was so perfect.

None of us could imagine that anything was wrong with him. He was so precious and beautiful.

Read Charles' Story.

Emma's Story

Emma Rose was born on May 17, 2004. She was very eager to enter our world - arriving before my doctor could even get to the hospital! She was a beautiful, healthy, and sweet baby.

We were so thrilled for her to join our family, and to have a loving relationship with her older brother Jake, who was 2 1/2 when she was born.

Read Emma's Story.

Krystie's Story

Krystie Anna Karl-Steiger was born on January 26, 2006 on a warm sunny winter day in California. Our precious little girl had a full head of hair, and gulped down her first bottle in record time. This beautiful creation of God was a gift that we had long waited for and she appeared perfectly healthy. We had no idea of what was to lie ahead.

Read Krystie's Story.

Lacie's Story

My name is Lacie Wivell and this is my story. I was born on April 8, 2004, to Rick and Lisa Wivell. I had two older sisters, Amanda and Rikki, and two older brothers, Levi and Colby. I also had another brother, Dakota, that went to be an angel in 2001.

Read Lacie's Story.

Ryan's Story

Ryan Anthony Babo was born February 19, 2002. Like all Tay-Sachs children, he was absolutely beautiful. I remember lying in bed next to him when he was just a week old, watching him sleep, wondering what I had ever done in my life to deserve him. He was the center of our universe, and we couldn’t have been happier.

Read Ryan's Story.

Molly's Story

Molly Grace was born on September 26, 2003. She was born 2 months early and weighed only 4lbs 0oz. Although she was so small she was very healthy. After only 2 and a half weeks in the hospital we got to bring her home.

I noticed early that Molly's milestones were behind, but her doctor kept saying she was delayed because of her being premature. Deep down I had a gut feeling it was something else, I guess it was a motherly instinct.

Read Molly's Story.

Elise's "Big Elise" Story

Elise Catherine ten Berge was born on February 5, 2003. She was our first child and as all new parents do, we thought about what Elise’s future would be like: her first word, her first step, and her first day of school.

Little did we know that Elise had a degenerative disease called Tay-Sachs which was already ravaging her central nervous system.

Elise would never have a first word, first step or first day of school.

Read Elise's Story.

Dakota's Story

Dakota Jean Bihn was born on May 30, 1999. She was a beautiful baby, weighing in at exactly 8 pounds. Everything about her seemed perfect. During Dakota’s first year, she developed as a normal baby should. She sat up, rolled over, ate, and walked, all when she should. Other than a little reflux now and then, she was a perfectly normal baby.

At around 2 years of age, I noticed that when she tried to talk she stuttered a bit. I was a little concerned, and brought it up with her pediatrician who told me that this sometimes happened as children began to speak, and not to worry.

Read Dakota's Story.

Conner's Story

Conner, a precious miracle and an amazing creature sent to Carl, Brenden and myself one cold, snowy January day. From the second he entered our life, I knew in my heart he was so incredibly special. His first smile, his first cry, even his first breath, he was--and remains--beautiful.

Read Conner's Story.

Lexi's Story

My name is Alexis Nichole Markowich...or just "Lexi". I was born on March 9, 2001 to Craig and Nichole Markowich and I also have a big sister named Brianne.

When I was four, on August 4, 2005, we got the devastating news that I had Juvenile Onset Tay Sachs Disease (JOTSD).

Read Lexi's Story.

 

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