Personal Stories

A Meaningful Life

Tara was diagnosed with Kabuki syndrome at 4 ½ years old.  She is now 25 and lives in her own home which she shares with another young lady.  She is supported by Creative Options Regina (COR), an organization that facilitates personalized support for individuals with intellectual disability.  We chose COR because their philosophy of Gentle Teachings is very much in sync with our own beliefs.

Introducing Calvin

Hi my name is Calvin and I am a 6 year old boy who lives it Michigan, USA and I was just diagnosed with Kabuki Syndrome this past April. I live at home with my dad, Dennis, my mom, Tracy, my sister Miriam (Mimi) who is almost 4 and 2 cats, Sadie and Sybil.  I was born two days before my due date in a small hospital in California. I needed a little extra oxygen so they transferred me to a bigger hospital that night.

Austin's Story

On December 15, 2003, we found out we were expecting our second child and we were absolutely thrilled! There would be only 17 months age difference between our new baby and our oldest son. We decided to make the announcement to our family and friends on Christmas morning and it was the best gift that year! 

Charles-Antoine's Story

Charles Antoine made an entry to this world a month ahead on august 25 th 1996 when 75 people were attending his parents' baby shower…they missed. Weighing 5 pounds 3 ounces he was the biggest premature baby of the hospital and the most beautiful thing that never happened to his proud parents. With an 8-9-10 “apgar” test result, we couldn’t expect to live the kind of life we are used to now.

Daniel - A Mother's Thoughts

Hi, my name is Sue, and I'm the mother of a child with Kabuki. Our family includes my husband Tony and me, 14-year-old daughter Stefanie, and 11-year-old son Daniel who was diagnosed with Kabuki when a year old. I started out to write a typical family history, but while meandering down memory lane, I realized that what stands out most is not the numerous medical challenges we've faced, but the emotional roller coaster we've been on - and felt this is probably universal to us all.

Bella - The Light of our Lives

Greetings! We have 2 children, Bella - 4 years old, and Matthew - 2 years old. Bella was born at 37 weeks 3 days after a successful round of IVF. My pregnancy was difficult as I was very sick for the first four months, had pre-term labor at six months and was hospitalized for toxemia at 34 weeks.