I have mentioned many times that I have met several families who have children with anophthalmia via an internet site. Well, a couple of us moms, nine to be exact, decided to take things a step forward. We are creating a new site dedicated to providing parental support to families with children with anophthalmia (no eyes) or microthalmia (small eyes). The site is up and running now; however, it is still in the beginning stages. For now there are only tidbits of information.
Go ahead and take a peak at it. You can also meet my friend Megan and read of a terrific story about her daughter Ava on the Family Spotlight Page.
We plan to incorporate many great resources. We also aim to let other parents know - it's okay - they are not ALONE in this world. I can tell you this, finding myself and our family in this new world with Ivey is isolating. No matter how much support our family has, no one can truly relate - period. Isolation. Although I can not call up my best friend, a neighbor or my mom to ask advice about Ivey, I have found a wonderful group of women and their families whom are spread throughout the US, Canada and beyond. Thank God for the internet.
So head on over and take that peak. Check back occasionally to read about other astounding children. The main goal-if by chance or God- you hear of or meet another family with a child with anophthalmia or microthalmia, please send them to the site. They will need it.
Thanks Guys!!!!
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6 comments:
What a great idea.
:)
Wow! It looks like you all have put a lot of work into that site. I'm sure many will be thankful for all you did.
what a blessing you are to these life's...
and Princess Ivey is really growing...wow..
I still feel a book coming on...
through the eyes of Ivey...
I love it. I loved all the pictures too!
Thank you for posting this blog about you and your gorgeous daughter Ivey! My brother was born with Microthalmia and he is now 15 years old. Watching him grow up and now go to highschool with a condition that most people dont understand has been difficult mostly for him but for his family as well. Your blog really touched my heart and I am so thankful that you created it.
Hello! My name is Angela and I also have a daugter who is 14 years old that also has microthalmia, bilateral severe/profound hearing impairment... I came across this site by chance and I'm so excited I would love to meet other families! Please feel free to contact me at: saucier_angela@yaoo.com
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