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Monday, April 18, 2011

SC Trisomy 18 Meetup and Birthday Party

Rebekah at 22 months

We will be celebrating Rebekah's 2nd birthday this week!  Unlike her grand 1st birthday affair, the guest list is much smaller and the venue is our backyard! However, the guest list is amazing - trisomy 18 families from possibly 4 states coming to celebrate and meet together for support! Kids will range in age from 1-10 years old!  We will also have a child with a 2q microdeletion, a chromosome 15 partial deletion, and possibly a trisomy 9p there as well.

Part of my passion since having Rebekah is to raise awareness of Trisomy 18 and similar conditions, and to EDUCATE the medical community that these children can thrive and that they deserve a chance. Each one should be evaluated as an individual, and not as a label - "incompatible with life".  So I sent out the following note to four local TV stations and one local newspaper hoping that someone would consider coming out and helping us to raise awareness.

Hope it works! Let me know what you think or how I could've made it better (for future events).

On Saturday, April 23rd, there will be a gathering of children with Trisomy 18 – a condition considered ‘incompatible with life’. These children will range in age from 1-10 years old – pretty good for someone told they shouldn’t be living!  We invite you to share their story. The details are below.

Imagine if you were told that your unborn child was incompatible with life? How would you feel if your newborn were denied medical services and life-saving equipment such as apnea and pulse ox monitors because it would prolong the inevitable? What if you were told that if your child does survive birth, you should not do any medical interventions because you would regret your decisions down the road? What would go through your mind if you were told that your child would be a vegetable and never recognize you or interact with their environment?  That is precisely what most trisomy 18/Edward’s Syndrome parents are told when diagnosed. 

Trisomy 18 is where there is an extra 18th chromosome. It is the second most common trisomy behind trisomy 21 (Down’s Syndrome), and about one in 6000 live births are to a trisomy 18 child. But still not many people know about it because of the low survival rate and lack of medical community support to help these children.  90% of the babies do not survive birth (either because of medical issues or termination) and of those that survive, only 10% will see their first birthday, usually with severe medical issues and global developmental delays. In the medical books, Trisomy 18 really does carry with it the term of being ‘incompatible with life’; that is what doctors are taught in med school, and what parents are told upon finding out their child has this genetic disorder.

On 4/21/09, our daughter, Rebekah Faith, was born with Trisomy 18.  She would have died from severe obstructive apnea if we had not made a decision at 6 weeks old to give her a life-saving tracheotomy.  The first year was full of ups and downs, but she has been doing really well despite severe developmental delays and she is redefining the term, ‘incompatible with life’.  We have learned so much from our journey with Rebekah over the past two years, and she is our little miracle and our hero!  We appreciate life so much more because of having her with us, and we definitely see God’s hand in the orchestration of her life.

In April 2010, the Simpsonville Tribune Times ran an article of her story and first birthday party, which was a grand event with several hundred people joining us at First Baptist Church of Simpsonville to celebrate her awesome journey and milestone.  On the afternoon of Saturday, April 23rd, we will be celebrating her SECOND miraculous birthday with a much smaller party, but we are expecting at least 5 other trisomy 18 children, and a few other children with chromosome deletion syndromes, to join us at this celebration!    This is quite incredible to have these kids together in one place, and see how much joy and love they bring to their families! None of them deserve the label of being called ‘incompatible with life.’  These children do not deserve to be thrown away and ignored because they have this label. If you could see all of them together, you would see just how full of life they are! 

We invite you to help change the views and medical practices of these children. Please come to Rebekah’s party on Saturday, April 23rd between 2-3 pm to meet and share the stories of these amazing trisomy 18 children, and let families and doctors know there is hope and support for children of trisomy 18.  

1 comment:

  1. Lots of tears as I read this post. I think it's a wonderful way to try and raise awareness. My little guy had a different chromosomal disorder, and I learned quickly that most people have no idea what it even means. I hope the birthday party was excellent!