Our extended family

Having a child with a rare diagnosis is some what isolating.

After Emily was diagnosed with Cri du Chat Syndrome in Oct 1999, nobody else in our world had Cri du Chat Syndrome, nobody had even heard of it.

Seriously, even our doctors didn’t know anything about it!

Facebook helped us connect with other families and when I started to blog, I decided to introduce you to some of our extended family!

Here are my interviews so far!

21. Let’s meet Arizona

20. Let’s meet N.

19. Let’s meet Jie Jie

18. Let’s meet Turner

17. Let’s meet Kali and Kera

16. Let’s meet Natalie

15. Let’s meet Wade

14. Let’s meet Nellie

13. Let’s meet Dustine Aaron

12. Let’s meet John

11. Let’s meet Olivia

10. Let’s meet Alexia

9. Let’s meet Allan

8. Interview with Rachel

7. Let’s meet Maxwell

6. Let’s meet Katie

5. Let’s meet Kelli

4. Let’s meet Rachel

3. Let’s meet Elijah

2, Let’s meet Allie

1. Interview with Emily

If you would like to be added to the list, please send me a note or reach out in the comments below!

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NEW!!!  We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter

I just discovered StumbleUpon but I have no clue what to do there: I believe you can find me under plebrass but I need to spend quality time there.

Find more about about Cri du Chat syndrome at 5p- Society

Emily has a her own page in the family stories , you can find it here: Emily

 

 

Faces of Grace

Whenever I have a chance to let the world know about my girl, I seize it.

I wish more opportunities would present themselves but for now, I will embrace what is there as I truly don’t have the time to go out and create opportunities.

Earlier this year or late last year, Emily was asked to be part of a calendar, to raise awareness for Cri du Chat syndrome

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You can find Faces of Grace Organization on Facebook

For the month of January, you get some facts on Cri du Chat Syndrome

Cri du Chat (Cat’s cry) syndrome, also known as 5p- (5p minus) syndrome, is a chromosomal condition that results when a piece of chromosome 5 is missing.  Infants with this condition often have a high-pitched cry that sounds like that of a cat.  The disorder is characterized by intellectual disability and delayed development, small head size (microcephaly), low birth weight, and weak muscle tone (hypotonia) in infancy.  Affected individuals also have distinctive facial features, including widely set eyes (hypertelorism), low-set ears, a small jaw, and a rounded face.  Some children with cri du chat syndrome are born with a heart defect.

And the model for the month of October is non other than Emily!
I bought many  calendars and shipped them to friends and family!

If you are in the US and would like a calendar, I beieve there are still some available for purchase : Here

If you are not from the US (like me) you might need to arrange with the person on the facebook page to get a calendar.  100% of the proceeds go to the 5p-society.

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NEW!!!  We have a facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter

I just discovered StumbleUpon but I have no clue what to do there: I believe you can find me under plebrass but I need to spend quality time there.

Find more about about Cri du Chat syndrome at 5p- Society

Emily has a her own page in the family stories , you can find it here: Emily