Meet Osama, the strong, courageous, animal loving, 7 year old fighter from Omaha, Nebraska. Osama has a rare genetic disease called NPC, which is fatal without his life saving medication.

Niemann Pick Type C (NPC) is an ultra-rare genetic, cholesterol storage disorder that primarily strikes children with death occurring before or during adolescence. This disease is often referred to as childhood Alzheimer’s because children affected slowly lose their ability to walk, talk, laugh, and eventually breathe. His treatments are SAVING HIS LIFE!

Osama and his family have to travel to Chicago every two weeks in order to receive his vital treatments at Rush hospital. Although the team in Chicago is nothing short of amazing and we are so grateful to receive this treatment that allows him to be the thriving little boy we know and love, traveling every two weeks puts an enormous amount of unnecessary stress on Osama and his family. Treatment days mean 3 AM trips to the airport, missed field trips, overnights in Chicago, and missing out on life more than any little boy should have to. As Osama gets older and progresses further in school this continuous traveling is not sustainable and affects his social and academic wellbeing. Osamas intrathecal infusions every two weeks take LESS THAN 30 MINUTES. Children’s Hospital in Omaha has stated performing the treatments would cost the hospital too much money for just one child however, Children’s Hospital is currently administering intrathecal infusions for children with another rare disease. Help us convince Children’s Hospital that what they refer to as one child is our WHOLE WORLD and to get Children’s Hospital of Omaha on board with providing Osama his treatments in his hometown of Omaha, Nebraska.

Omaha is the best community we could ever ask for. We are asking you, as his community and support system, to sign this petition!

Part of children’s Hospitals mission is:“We strive to improve the lives of children, families, and entire communities.” Striving to make and improve lives of not only the children that they care for but their families and communities! Let’s show them he has a community that loves and supports him to get this treatment in Omaha!

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