Sedona S. - Quilt Finished in 2008

Born: January 6, 1997

Illness: Landau Kleffner Syndrome, Cerebral Folate disorder, Interstitial Lung Diease and Lennox Gaustaut, CAPD, Speech Delay

Sedona S.'s Story

Written by Sedona's mom in January 2008

(From their personal webpage)  This is a website to honor my daughter Sedona who was diagnosed with Cerebral Folate Disorder, Landau Kleffner Syndrome, Interstital Lung Disease and Lennox Gaustaut Syndrome.

Sedona was diagnosed with Landau Kleffner Syndrome at 18 months of age. With this we saw seizures and a decrease in communication skills. At 5 years, she was potty trained and said her first words.

When she was 7, we took her TCH and she was diagnosed with Cerebral Folate Disorder. This is a Folinic Acid Deficiency. This also causes seizures and other impairments.

When she was 9, she was diagnosed with Interstitial Lung Disease. Even though we took her to 4 Pulmonogists no one has been able to tell us why 100% of both lungs have white spots in them, causing her to need 5 liters of 02 at night and low 02 levels.

When she was 11, she was diagnosed with Lennox Gaustaut and has been having over 500 petitmal and over 70 drop seizures per day.

Through everything she still has a skip in her step, a smile on her face and a laugh that warms up a room.

"Life is not how you survive the storm but how you dance in the rain."