The Many Faces of Moebius Syndrome!

"Kali's Story"

Kali Joene Staggs

Born: January 12, 2008, 37 weeks gestation, Colorado Springs, CO, USA

Bilateral Clubbed Foot (corrected without surgery thanks to Dr. Ponseti :), G-tubed at 1 month old, Trach-vented at 4 months old, spent 2 months in NICU, 6 months in Denver Children’s Hospital.

Now that I have all the “stuff” out of the way...Kali is almost 2!  I cannot believe how slow and fast time goes by.  Our first year with Kali felt like 4, but 2009 has definitely flown by with tremendous success.  I am so proud of who she has become and how strong she is.  For a little while I started thinking that my life was always going to be “this way”.  I have to come to find that with Kali and from the sound of it, moebius syndrome, you just have to be patient. 

We have been very fortunate to become friends with a little boy who also has moebius syndrome and only lives an hour south of us.  I am hoping that soon we can live closer to them and that Kali and Kevin will be able to grow up together.  It has been such a blessing to know such an amazing family!  I have found comfort and the occasional laugh or two just by knowing that some of the things Kali does is “a moebius thing”.

Kali loves the color orange.  It never fails to surprise me when I realize that she only plays with the orange toys (if she has a choice).  She is extremely independent...only doing things that she wants to do and when she wants to do them.  She is also extremely determined, smart, loving, and patient.  Which I think is the driving force behind her beautiful progress.  Kali started crawling about 2 months ago and is very close to standing by herself and taking her first steps.  She HATES praise!!!  Whenever she does something amazing...that typically would call for video cameras, jumping up and down, and lots of “YEY!!”s I am forced to bottle it up and give her a very calm and cool, “good job”.  She loves to read, she is very attentive as you read to her and loves to learn about new things.  Kali is becoming a pro at communicating to us through sign language.  She uses over 40 signs and of course has her own signs in which we have yet to figure them all out.  This spring Kali will become a big sis! Her baby sister is expected in April.  Kali is the joy and love of our lives.  I am so blessed by her and she has made me such a stronger person.  

I love being apart of this beautiful moebius family and the support that each of you give me is incredible!  I am a proud lover and cheerleader of all things moebius.  I would love to get to know all of you so please feel free to contact me any time!

All our love,

Shandy, Chad, and Kali STaggs