Kylie summer j. Ferrer

Born: April 22,2014, twin to a baby boy named Kyler Rain (who did not survive after 8 days due to late diagnosis and they did not know yet it was CHI)

Fist 5 months of life diagnosis was Seizure Disorder or epilepsy. Was prescribed phenobarbital & depakene but She was still having seizures 4-8x a day, weak, lethargic and somtimes unresponsive.

Was transferred to another hospital and diagnosed with Metabolic Disorder until finally she was diagnosed with CHI by a doctor who recognized the symptoms.

She will be turning 3 years old this April 22, she still cannot walk or talk because of the late diagnosis and persistent hypoglycemia she has severe global delays. Her parents cannot afford her medicines and needs most of the time as well as therapy to help Summer cope with her severe developmental delays.

Sometimes her seizures lasts as long as 30 minutes and happens a few time per week. Her only management to raise her blood sugars is by giving her drinks high in sugar like milk with 2 tablespoons of Karo syrup.

Currently the dark Karo syrup is difficult to find in the grocery stores. Summer sometimes uses glucotabs bought from outside the country by relatives and friends, but the supply is inconsistent and often not enough.