Thursday, October 8, 2015

Identical Twins with Down syndrome AND Autism Statistics?

Thanks to Facebook I have met a few other families who are doubly blessed like our family is with identical twins both having Down syndrome.

Not only have I met families with identical twins but also families with fraternal twins both having Down syndrome.  To this day there are no updated published statistics of how rare these blessing are.  There is a lot of speculation and a few really good mathematical guesses but no actual numbers.  Of course in a group of parents there are some really great guesses and I loved what one parent said.  She said "We were told the odds were 1 in 80 million 20 years ago, rare yes, the number doesn't matter.  We are the lucky ones!!!"

This is the best documentation I've found thus far from a website from the UK > Click here to view page.  To summarize page read the following:

"We estimate that identical twins with Down syndrome occur at the rate of 1 or 2 in a million pregnancies and non-identical twins at the rate of 14/15 in a million."

With that statistic above now think of the 90% termination rate of those found prenatally to have Down Syndrome detected.  AND then to add Autism & ADHD to the mix makes the Hanzely twins so rare and so special.  Please Lord let me hold my boys tighter and love them harder each day knowing that you have given us a gift that so many will never know or understand.  Some may look at us and feel sorry, some may look at us and be thankful for their healthy kids but I know that my days are filled with an amazing loan from God himself. These two try my nerves more than I wish to confess, these two know all their mom's buttons, these two are so hard to figure out most days but to look back at how far they have come makes me literally have to type through tears streaming down my face.  They can't talk, they can't dress themselves or feed themselves with utensils without help, they still wear diapers and make messes I will not share information about on this post, but we are truly and absolutely blessed.  Without them we would take the world and the ease of living life for granted.  I pray that whoever is reading this would take time to get to know someone with special needs, to get to know their parents and to know that different is not a bad thing.


Denny Bonavita said...

Greg, now 37, has Down syndrome but not autism. He wore diapers/had accidents well into his teens. We coped, with a lot of help from siblings and extended family, neighbors, friends, strangers ... the whole village. It can be done, and it is worth the trouble.

Rosa said...

Beutiful! I have a child with Down syndrome and Autism. There is something so powerful in these kids that are able to transform us, parents, in better humans.

Mary Pat Finnegan said...

Hello , thank you for sharing this . I’m grateful to read this! I’m just seeing your blog on World Down Syndrome Day, 3/21 , Its nice to meet another blessed mom... I’m the mom to 3 wonderful children , my fraternal twins are both with Down syndrome and Autism too ! I’ve yet to meet others with our unique and rare blessing... I love your beautiful message and I totally relate to you .... 💕