Thursday, September 29, 2011

Yellow

Five and ten years ago, our family was forever changed.  We were blessed with two precious daughters, Claire & Lola, both of whom happen to have primary microcephaly.  In our daughters' cases, the condition is autosomal recessive, meaning the chance of recurrence is 25%, or 1 in 4.  We submitted DNA almost ten years ago to try to isolate the gene(s) responsible for our daughters' diagnoses.  Suffice it to say, we are STILL waiting for results (and recently sent more DNA to the UK for further testing focusing specifically on the microcephaly + dwarfism link).  To complicate things further, our girls have additional diagnoses such as dwarfism, epilepsy, spastic quadriplegia cerebral palsy, cortical visual impairment, reflux, and more.  I don't often mention or focus on these characteristics because to me, they are just tiny pieces of who our girls are, and they *certainly* do not define them.  They are SO.  MUCH.  MORE.

Tomorrow, September 30th, is National Microcephaly Day.  In honor of Claire & Lola, we ask that everyone please wear YELLOW in support of all families who have loved ones with microcephaly!  WE HOOLIGANS THANK YOU (!) for supporting our family, following our blog, and most of all, for LOVING OUR GIRLS.  It means the world to us.

Enjoy the following pics of our girlies, sportin' their yellow bows... they intend to milk the yellow for all it's worth in honor of all their "peeps" with microcephaly! 

(And please, PUH-LEEEEASE, try to ignore the dwarf sibling rivalry below... it turned into a real clusterf*** part-way through the photo shit shoot.  Claire-bug insisted on being a real jackknob to her sister today.  Cracked.  Me.  UP!  Maybe because Lola deserved it after keeping Scott & I up ALL DAMN NIGHT, or maybe just because I loved seeing Pocket pout as a result, or maybe because I've known all along Mimi was a badass, and these pics just prove it... I don't know, but regardless, ENJOY!  :)
Claire Elise  ~  Age 10


Lola Grace  ~  Age 5
















"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile."   ~Author Unknown

xo

11 comments:

The Every Day Extraordinary said...

Love you and will sport my yellow tomorrow: ) I'll put it on the kids too.

Lisa said...

I love that they have each other. God knew what Claire needed. Not a "normal" sister, but a little girl that could be the sister she needed. Your pictures are so beautiful! They have each other and that warms my heart.

Unfortunately, it's not always about what we want and I know you know that. It took me years to figure that out.

Steph said...

Anabelle's family is decked out in yellow for all of Anabelle's amazing buddies. Thinking of you all today and sending best wishes for good health.

Monique Kusky said...

Your girls and your family are an inspiration for those of us whom have no clue.. I recently found out my 19 month old son has been diagnosed with microcephaly I am completely lost and have been looking for that one story to bring piece to my heart and I have found it I will remember you always and pray for your family daily I only hope I can learn to be has strong God bless you all

Anonymous said...

10 years for a genetic diagnosis? Thats way to long!

Im working in a molecular diagnotic laboratory and we do a novel kind of mutation screening.

Check us out,

http://www.cegat.de/Epilepsy-&-metabolic-disorders_l=1_43.html

In Panel 10 you will find all knows genes for primary microcephaly with Epilepsy. We can do them all parallel in less than 4 month!


you can contact us by email:

info@cegat.de

Gwen said...

Anonymous -- I've had some of the best labs studying their exact conditions analyzing their genes for 10+ years with ZERO matches. They've likely been checked for all those things in Panel 10. Thanks for your concern -- but honestly, it doesn't really matter to us what genes are "off" as we are not intending to have anymore children. THANK YOU for your concern though.

Gwen

Anonymous said...

Beautiful (and funny) blog, and beautiful girls. God bless you guys.

Anonymous said...

Hi,I just found this site. I love your pictures. I've been following your family on facebook.I think that their so funny and theres nothing wrong with sisters bickering, I used to fight with my sister and brother, but I also was the one who took up for them i someone else picked on them. Today we couldn't be any closer.They're just being sisters. Love you and your family and I think you are so pretty. Make more videos pleaseeeeee. Thank You, Dawn Jay

Shannonbarnesdr1 said...

they are BEAUTIFUL !! they're not broken or damaged, never let anybody tell you that, they are perfect and i am willing to bet they are happy girls !! you have such beautiful daughters, love them teach them and cherish them !!

Kajjam Jobs said...

i have my sister with similar symptoms but docs in india have no idea wht is the exact problem . can u plese share ur email id with me or send me test mail to kajjamj@gmail.com. iwant to dicuss somthing with u abt my sis pleezz

Anonymous said...

they are adorable
i suscribed to your youtube account several months ago

Related Posts Plugin for WordPress, Blogger...