Meet Tegen, a kid who has crushed every obstacle he has faced with a smile; who loves playing in the water; adventuring with his many siblings, listening to all kinds of music, and riding his pony, Scout!
Tegen’s origin story is a powerful one: He was abandoned near an Ethiopian market at 9 months old. He was found in a ditch, covered in burns, needing a lot of medical attention, and was delivered to a police station.
Shortly afterwards, Tegen was met by Jennifer, who instantly saw how special he is, and fell in love with him. Thus began his journey home to the United States, where he would become part of the Crooks family.
Tegen’s new parents knew from the start that he was going to require complex medical care his entire life. His early challenges included severe seizures, developmental delay, and a bout of necrotic pancreatitis.
At three years old, Tegen was diagnosed with CLN1 Batten disease, a rare and devastating neurodegenerative condition. His doctors didn’t expect him to live beyond the age of 4 or 5 years old.
Tegen is now 10 years old. While he continues to defy the odds, he lives with multiple seizures per week, is nonverbal, has scoliosis, muscle spasticity, vision impairment, and uses a G-tube to help him take in nutrition.
There is a cure, but there are only eight doses in the world. His family is working hard with doctors from multiple countries to hopefully obtain one of those curative gene-therapy doses.
He currently receives weekly therapies, Stem cell treatments every 4 months, and requires medications daily. During all of these, he never fails to show his strength and positive attitude.
Tegen will be adopted as a Sparrow to Bend Senior High School. Students will work hard to earn money for Tegen through sponsored community service, supporting him and cheering him on as he and his family continue to navigate his medical journey.
