KAYLIE MICHALSKI

Kaylie loves to cuddle and give kisses. Kaylie had been on target with her developmental milestones, babbling and saying Mama, Dada, Baba; she was able to finger feed, creep then crawl and pulled to stand a few times up until she was 10 months old. Kaylie then began to loose these skills. Kaylie experienced about a 1 ½ years of regression and was overall uncomfortable. Kaylie quit sleeping and would cry, whimper, or scream much of the night. In the past year, Kaylie began to show and increase attentiveness to others and now has regained some minimal grasping with her hands. She is a lovable child who loves playing with her big sister, Maycie, and friends. As life recently appeared on an uphill swing, she then developed seizures which are also often a part of Rett Syndrome. Our children live with constant battles only to end with death often at young age. Kaylie has some days where she is alert and aware, wanting to be in the middle of everything and other days she prefers to be quiet and mellow.

Life with Rett Syndrome is full of ups and down, similar to a roller coaster. Our family tries hard to take the ride and hold on tight but not forget the most important aspect which is LIFE itself. Kaylie goes with us everywhere and we try to expose her to the things in life most 4 year old kids do, however the road is bumpier.

Rett Syndrome is devastating to see how it affects our children. Cognitively she is very aware but is so hampered by her limitations that she relies on others to understand what she needs and wants. Coupled with loss of her motor skills, she is hampered with poor communication skills, inability to speak and minimal functional use of their hands to access pictures and standard communication devices. Kaylie, just as many other girls with Rett, has respiratory problems and in addition to hyperventilation or holding her breath has reactive air way diseaserequiring breathing treatments twice a day. As we have explained to her sister, friends and 4 year old cousin, Kaylie is playing catch with the air coming out of the tube. A positive skill is her expressive communication skills and she has a great laugh. You connect when looking into her big beautiful eyes she smiles uses her body language and gives you a slobbery kiss.

THE MICHALSKI FAMILY-
Jean-Marie, Jamie, Maycie (7) and Kaylie (4 ½ RS)