Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Monday, March 18, 2013

Trisomy 18 Awareness Day

Today, 3/18, is Trisomy 18 Awareness Day! Here is some information I would like to share with you on this important day:

T - a Trisomy occurs when there are three copies of a particular chromosome instead of two. The addition of extra information can cause anomalies to develop during gestation. In trisomy 18, heart defects and kidney defects are very common. Other common characteristics include clenched hands, rocker bottom feet, small chin/jaw, and cognitive and developmental delays.

R - Raising awareness. Today, 3/18, is about raising awareness of trisomy 18. Before Julia was born, I did not know much at all about trisomy 18. Many health care professionals know very little about it as well. Educating the public and the health care profession can raise the access to and standard of care for those affected by trisomy.

I - Information. Having access to current, up-to-date information is crucial for parents and health care professionals when making treatment decisions about children with trisomy 18. Much of what is published in medical literature is out of date and inaccurate. We need to rely more on recent publications and access to families and physicians with experience with trisomy 18.

S - Special needs. Individuals with trisomy 18 absolutely will have additional needs. They may need assistive devices to eat, to have mobility, to communicate and more. They may need various procedures and therapies. The technology available today makes those things possible!

O - Outreach. The trisomy community offers wonderful support to families and can also be a resource for the medical community when it comes to trisomy 18. A list of support organizations and groups can be found here.

M - Me. Each person with trisomy 18 is an individual. As such, each person deserves the same rights as any other individual. The right to LIFE, liberty, and the pursuit of happiness.

Y - Years! Some individuals with trisomy 18 can live years! With increased access to treatments and support more of these precious children can live longer lives with their families who adore them.

18 - For my list of "18 Things You Should Know About Trisomy 18" click here.

My Julia, full trisomy 18, at age 9 months


Jodie said...

Love this. Thinking today of how much joy and beauty Julia brought to this world.

Baby G said...

Beautiful blog Jenny! thinking of you all<3

Kendra DeLong said...

My nephew is a mosaic trisomy 18. He is currently 4 years out from liver transplant due to cancer that despite reservations the tumor kept growing back. Thank the good Lord for organ donors. He also has horseshoe shaped kidneys. He was born at 28 weeks due to the trisomy. He is a thriving 6 yr old going on 7 in a few weeks.

L said...

Great post Jenny! I'll just have to put a link to it on Lilly's blog today. :)

BR said...

You have taught me so much about trisomy 18. I had only barely heard of it before baby Julia. Great photo!

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