Kaylee's Dream to Walk

Kaylee Trevis has a dream to walk.

Kaylee is a 4 year old girl with a rare genetic disorder called Congenital Disorder of Glycosylation (CDG) that has changed her life forever. CDG is a rare inherited metabolic disorder that affects a complex enzymatic process called glycosylation. This process is critical to normal organ development and maturation throughout the body especially for the nervous system. CDG is a rare disorder, with only approximately 1000 cases diagnosed world wide. The diagnosis of CDG should be considered in any child with unexplained (and often profound) developmental delay, failure to thrive, stroke-like symptoms, seizures and cerebellar dysfunction. CDG affects most organ systems to varying degrees, so children will often display abnormalities in liver enzymes, digestion and absorption, glandular function (i.e. thyroid), blood clotting, and immunologic function (infectious susceptibility).

Kaylee has overcome many obstacles in her short 4 years including eye surgery for her strabismus, absent seizers, having a feeding tube placed to get the proper nutrition, and many hospitalizing illnesses. Now Kaylee is trying to get over one more Obstacle. She dreams to walk. Kaylee has been in traditional therapy since 6 months of age including physical, occupational, speech/feeding clinic and now hydro therapy. Kaylee has been working so hard for over the last year to walk, but now she needs your help.

Kaylee has been selected to be a part of an Intensive Therapy Program at the N.A.P.A Center in Los Angeles California, February 22 – March11, 2016. This therapy is a therapeutic approach to treating children and adults with cerebral palsy and other neurological disorders. The therapy runs for 4 hours a day, 5 days a week for 3 full weeks. The 3 week intensive program is based on strengthening and conditioning, decreasing unwanted reflexes, and teaching new improved motor patterns through repetition and correct alignment. Many children gain more progress towards their goals in 3 weeks of intensive therapy than they do in a whole 12 months of ongoing traditional therapy.

While in California they will also be attending the 2016 National CDG Conference. There will be doctors from all over the world teaching parents about this disorder. Kaylee will be able to meet other children with CDG and her mother Jackie will learn what to look for as Kaylee gets older.

Neither the Intense Therapy or the CDG Conference are covered by medical insurance and are extremely costly. Though Kaylee’s parents are working hard and have found a way to pay for most of the costs they really need your help with the rest of the expenses.

Thank you for sharing this video and Kaylee’s Story with your friends and family. LET’S MAKE KAYLEE’S DREAM COME TRUE!!!