Amniotic Band Syndrome ~ So little Information

Amniotic band syndrome affects 1 in 1,200 live births. And it is said to cause  178 in 10,000 miscarriages. And over half will involve the hands, fingers and club foot.  But if you begin to try and dig deeper and find out more  about Amniotic Band Syndrome there is nothing.  We don’t know how many people effected with ABS go on to College and have families.  We don’t know much of anything except for the hard facts.

This breaks my heart to know that there are so many people out there in the world that are effect by Amniotic Band Syndrome and there is really no where to turn.  No support system.  No community of people.  Nothing like that.

It is time to make a change.  It is time to make the world aware of Amniotic Band Syndrome but more importantly it is time to give these Moms, Dads, Families and Friends a place to go to get support.  So that they no longer feel alone  in the world.  WE are not alone.  We are many.. Many more then you would ever imagine.

Everyone Needs Someone

girlssilly

No matter who you are or what you do you need someone.  Someone to talk to when you are sad. Someone to share the most amazing news in the world with. Someone to play with.  Someone to hand out with.  Just someone.

Haylee has been very blessed since the day she was born to have that someone.  Someone besides Mom, Dad, Aunt, Uncle.  Someone her own age that knows and thinks the same way she does.  She has her best friend in the whole world. Her cousin Tiki.

Tiki and Haylee are 6 months apart and have been the best of friends and the best of playmates since really before Haylee was born.  When Tiki was just a wee little thing I used to sit her on my belly and rock her to sleep as Haylee kicked her in the back.  Tiki would fall asleep every single time.  And they have had each others back since then.

They don’t live super close to us like they used to and after a few months you can really start to tell the Haylee is missing Tiki and just needs some Tiki and Haylee time.  And usually about that time we head down to where they live or they end up here for a visit.

I have to say that I could not be more pleased that Haylee is so blessed to have Tiki in her life and share her ups and downs with her.

Nubbin’s

Haylee has Nubs. Nubs are just one form of ABS. Nubs happen when the growth of fingers is stopped at an early stage of development. Some children have small nubs like Haylee and other children have longer nubs.