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Heather M.

United States
Carter was born on March 27, 2009. We were surprised to learn that he had a cleft lip/palate and was missing his right outer ear. Our little guy was whisked away to the NICU with breathing difficulties. A few days later he was transferred to the children's hospital which is one hour away. He spent the next 10 weeks there. During that time he was diagnosed with a Chromosomal disorder which...

ERIN HAYES

United States
I'm a mother of two who recently lost our first child, Charlotte, to a rare chromosomal issue that resulted in various health issues and complications. She was 3 years and eight months old. With her we dealt with developmental issues as well as heart, lung, kidney, and feeding issues. She used oxygen and a feeding tube for most of her life. Ella, my second child, is not affected by this disease...

Raising Joey Patient Expert

Hartford, Connecticut
  I am a stay at home mom and my blog is dedicated to my 2 1/2 year old son, Joey who is blessed with a little extra chromosome called Trisomy 21 or Down syndrome and also to our little baby girl, Leah Rose, who is one year old. One of the main reasons I started blogging about Joey, was to help promote awareness about Down syndrome and to let people know that life...
Communities: General Medicine

Jodi Patient Expert

Olympia, Washington
I live in Western Washington with one sweet husband, one 20 year old drama queen (DQ), one 17 year old with an extra chromosome, two cats, one rowdy dog and a *new* parakeet.
Communities: General Medicine

Mom2Taytiebug

Lebanon, Oregon
My name is Dawn and I am the mother of a 20 year old daughter with a rare chromosome abnormality called Trisomy 9p. She was diagnosed with Lennox-Gastaut syndrome, a seizure disorder. She is considered medically fragile, but she is a fighter. She was not expected to reach her 2nd birthday and here she is, 18 years later, still smiling through it all. I think that we parents of special needs...

Hank Osborne

Goose Creek, South Carolina
I'm the father of Caden Gabriel Osborne (pictured). Caden born with 22q11.2 on 11/2/04 has endured numerous complications associated with a 22q11.2 chromosome deletion. His primary diagnosis is also called VCFS (Velo-Cardio-Facial Syndrome) or DiGeorge Syndrome. Caden's complications have included multiple heart defects, scoliosis, feeding difficulties, hypocalcemia, immune deficiencies, and...

Joan Jones

California
Hi, Hannah Grace is my 3rd daughter, she ws born 7/9/95. She was born with a deletion on her chromosome #1 q24.1-31.1. She has many issues and disabilties from this. She is developmentally the size of an average 4yo, 40 lbs and 40 " tall.  She is about the mental age of a newborn baby. She breathes through a trach with a ventilator and eats through a gtube in her tummy. She has...

Chris H.

United States
My name is Chris Hempel. In October 2007, my husband and I received life-threatening news about our cholesterol - but our lives weren't in danger. We learned that we were born with a defect in a critical cholesterol gene and that our precious six-year-old identical twin daughters, Addi and Cassi, inherited a double mutation - both genetic cholesterol defects. For many months, I'd known...

Pallavi

California
I am a mom to a lovely girl 'Navya' born on 6th Sept 2008. Navya is born with an extra chromosome. I have started this blog to post our journey with Navya. Hope you enjoy reading. :) Please feel free to comment.
Communities: Down Syndrome

Christine P.

Riley, Michigan
Hi, I am Christine, a mother, a wife, a sister, an aunt, a godmother, and a friend.  I have three wonderful boys. Andrew (14), Kenny (12) and Jonathon (2).  Jonathon was our big surprise;after trying for 9 long years to have one more child, we just gave up in August 06 and Oct 06 I was extremely ill.  To find out "SURPRISE" your pregnant.  This is my story of...
Communities: Down Syndrome