June 22, 2010

Cards for Kylie

Meet pretty Kylie...


Kylie is 6 years old and has been sick for about a year and a half. In spring of '08 she had a seizure and it led to many other problems. She is still techinically undiagnosed (she is diagnosed with a neurodegenerative disorder of unknown origins). 

She went to the National Institute of Health's Rare Diseases whose physical therapists were able to give her parents some information that they could give to her school.  She is currently in Developmental Kindergarten and will transfer to a different school for first grade, but may not be in the developmental 1st grade. Mom Gina's biggest concern is that because of Kylie's physical issues she will be left behind intellictually - she is a very smart little girl.  This is a video we put together for the NIH when they were still working on the application process last summer - http://www.youtube.com/watch?v=NaHaENbczi4&feature=player_embedded.
We do not know what Kylie's life expectancy is yet, when she first became sick she deteriorated so fast that the head Pediatrician at our local hospital gave her a year, it has been longer than that, and depending on how her illness progresses she may have a long life, but until we get a diagnosis we won't know for sure.

The family includes:

  • Kylie - 6
  • Sister Ashlin - 3
  • Sister Shayla - 2
  • New baby sister - Chloe
  • Mom - Regina
  • Dad - Steven

To keep up to date on Kylie's progress, click HERE.

UPDATE: Kylie is in regular 1st grade, she has an aide that helps her during lunch and recess, she receives physical therapy once a week and has had minimal problems thus far. NIH may be closer to a diagnosis, my sister sent in more blood samples to do a few more tests. CNN keeps changing the air dates for their Anderson Cooper 360 special featuring the NIH undiagnosed program which includes footage of Kylie and her parents, last we heard it is now going to be during sweeps-whenever that is lol.  Kylie has a new baby sister-Chloe was born 9-7-10.