Kyli Margaret’s Story
If you have faith the size of a mustard seed, you can say to this mountain, 'move from here to there,' and it will move. Nothing will be impossible for you. ~Mathew 17:20
Videos (click to view):
Kyli was born May 28,2002. She is a joyful girl with an infectious spirit and extraordinary will. She has beaten odds and made tremendous progress with the help of prayers, therapists, volunteers, family and friends.
At 11 weeks old, Kyli was hospitalized for Failure to Thrive (FTT). She has been tested for just about everything Doctors can think of. Nearly seven years later she still does not have an official diagnosis other than "metabolic encephelopathy of unknown origin."
Ongoing Prayer Concerns:
- Remaining seizure free and illness free.
- Achieving a healthy weight. At 7 years old she is 39.5 inches and only weighs 31 lbs.
- Developing a regular sleep pattern. Kyli is truly a night owl often not falling asleep until 4AM.
- Progress in all areas of physical development. Kyli is not independently mobile at this time.
- Progress in intellectual development through improved vision and use of her hands which enable her to communicate.
- Obtaining an answer regarding a medical diagnosis.
- Ongoing strength and endurance for Kyli's parents and caregivers so that we may continue to help Kyli be the best she can be.
Joys and Miracles:
- Kyli is considered legally blind, but can read large words.
- Kyli has been fed primarily via a g-tube since nine months of age, but by the age of four began eating 60% on her own. (Note: After her March 2008 illness Kyli has not taken anything orally. She has been 100% G-tube fed. We believe she will get her skill back.)
- Kyli started giving hugs at age four and kisses at age five (Oh what happy days!).
- Though Kyli does not speak, she communicates YES/NO with a facilitation board and has even begun spelling short phrases.
- Kyli started going on the potty March 2009 w/ a 70% success rate.
Kyli's Favorite Things:
- God and Angels
- Music (Phantom of the Opera, Vivaldi, Miles Davis, Josh Groban, Mercy Me...)
- Birds (She gets her very own concert daily!)
- Kleo- her gaurd cat
- Being read to (Pippi Longstocking, Cricket in Times Square, and Secret Garden to name and few.)
- Helen Keller is Kyli's hero
- Taking walks
- Pool from Make-A-Wish Foundation
- The NY Yankees (especially Alex Rodriguez)
- The Jets
- Patterning with her faithful, beloved volunteers
- Family and friends
Smiley Kyli, Goosey, Kyli-Lou-Who, Lady Jane, Mammy or Mam-a-lam, Boss Lady
30 Days for Kyli was launched September 2006. In 2009 we added Kyli's friends to this event. To learn more about 30 Days for Kyli & Friends please visit: http://www.30daysforkyli.com/
VICTORY WILL BE OURS!
We believe Kyli will continue to overcome. We recognize there will be obstacles along the way, and there have been many, but we BELIEVE.