This is my niece Josephine. 
She was born on October 22. 
Shortly after she was born she was diagnosed with Trisomy 18, or Edward's Syndrome.
She was born on October 22. Shortly after she was born she was diagnosed with Trisomy 18, or Edward's Syndrome. She will not live long-trisomy 18 is genetic disorder where there is extra material from the
18th chromosome (like extra material from the 21st chromosome causes down syndrome.) About 95% die in utero. Of liveborn infants, only 50% live to 2 months,
and only 5-10% will survive their first year of life.
Josephine has had many blue spells. Because of her condition she will stop breathing.
Josephine has had many blue spells. Because of her condition she will stop breathing. It seems that anytime her little body is under stress she has difficulty breathing.
My brother asked me to make her a burial dress after the first episode.
My brother asked me to make her a burial dress after the first episode. This was a wonderful experience. I felt so honored to be apart of Josephine’s life,
to sew a dress that instead of being her christening gown would be her burial gown.
Josephine is going strong on 1 month!
My 
The auction will start November 26th and last one week. 
8 comments:
This is such a sad story. I love babies and hate to think of one that is not well. Best wishes.
She is such a beautiful little baby. You are so talented Jeanne to make her such a beautiful dress. Keep us posted on how Josephine is doing.
So I just read your sister in laws blog about Josephine. What a strong lady she is. It reminded me of my own mother. Although mother never had the chance to hold her daughter and say goodbye, dad did. Mom at the time was not a member of the church. Shortly after suzannes death the missionaries came and told mom about the plan of salvation. Like your sister in law mom also is comforted by the fact that one day she will be able to hold my sister in her arms once again.
What a sweet baby.
Sweet little Josephine passed away on December 24th. All I can say it Good night sweet princess may courses of angels carry thee to they rest. You were a bright shinning star and we were blesed to know you even briefly.
How special to have made the burial dress for that sweet little baby. I can only imagine how hard it is to know your baby isn't going to last long. So sorry for your families heartaches.
Dear Jeanne,
This is a lovely site you created. Your niece was beautiful. I am a scientist working as part of a team dedicated to preventing trisomic diseases including Edward Syndrome. We are also attempting to prevent miscarriages and infertility. We are raising money for our research work at the University of Maryland School of Medicine. Would you permit us to use the picture of Josephine in the hat, and/or the picture of her holding her parent's finger? We will provide the web addresses of the sites we would post the picture(s) on. thank you for considering this request. Sincerely, Lori R. Bernstein, Ph.D. Adjunct Faculty, U. Maryland Medical School; Chief Scientific Officer, Pregmama, Gaithersburg, MD
Post a Comment