Amanda they are just so beautiful, thoughtful, inspiring and empowering!!! Nolan would be so proud of you- if it was possible to be any more proud! And Lexi must feel like such a special big sister too. You make me, as a "Trisomy Mum", feel so lucky- if I dare use the term! Thinking of you guys always, Cara (Mum of Vivi Rose) xxx
Nolan Alex Chisaakay-Soucy... Born June 25th 2009, Changed our lives forever.
Nolan was born with Trisomy 18, me and his daddy found out about his diagnoses at 22 weeks gestational.It was a very sad moment hearing the words"you need to think about termination because he won't survive to term,and if he does he will die shortly after birth"we knew that was'nt a choice for our precious boy.We gave him the right to live as long as his little body could be here for, we wanted to meet him properly and give him the best life a little boy could ask for...we did just that, and still are!
Your probably wondering What Is Trisomy 18?
Trisomy 18, also called edwards syndrome,is a chromosomal condition associated with severe intellectual disability and abnormalities in many parts of the body.Babies with trisomy18 often have a low birth weight, a small head,small jaw and mouth,clenched hands with overlapping fingers,heart deffects and other abnormalities of other organs.Due to the presence of several life-threatning medical problems, 90-95% of babies die in utero and those 5-10% born alive wont live with this condition to see their first birthday. Trisomy 18 is instead of having the 2 copies in the 18th pair there is 3 making this too much information for the cells in his body, this is what causes all the disabilities.
Nolan is living with a large whole his heart, but you wouldnt even know because he's full of love.We love him dearly.
A song created from a friend (pause nolans site music and select this link) amazing
I am 23 years old and have three beautiful children two girls and one boy.My daughters name is lexi and ,my sons name is nolan he has full trisomy 18 and is a pure miracle who lived to be 19 months he passed away january 21 2011 to complications of RSV.Im engaged to be married to a wonderful man named Nathan of nearly 10 years we have finally set the date to become mr and mrs August 23 2014 My family is everything to me! Nolan Alex Chisaaky-Soucy went to heaven January 21 2011,he lives on in our hearts forever.Love you little guy...We recently added a new edition to the family a little girl named kinsley! born November 11th!
1 comments:
Amanda they are just so beautiful, thoughtful, inspiring and empowering!!! Nolan would be so proud of you- if it was possible to be any more proud! And Lexi must feel like such a special big sister too. You make me, as a "Trisomy Mum", feel so lucky- if I dare use the term! Thinking of you guys always, Cara (Mum of Vivi Rose) xxx
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