Four-year-old Bryce Johnston is facing gradual blindness, which is the first clue that eventually revealed Alstrom Syndrome. It is the result of such a rare genetic mutation that there have been fewer than 800 cases recorded in history. So now the family knows that blindness is just one of many problems she will face.
Mother Cassie Johnston said,"It affects multiple organs: complete blindness, deafness, diabetes, cardiomyopahy, heart failure, COPD."
Bryce's doctor, Dr. Adaobi Kanu said, "She became under my care because she had chronic and recurrent pneumonia and sinusitis. This is how this affects the lungs, recurrent sinusitis and pulmonary infections. This can lead to scarring of the lungs that can lead to chronic obstructive pulmonary disease."
Even though Bryce's case is rare, the hope is that by learning more about Alstrom Syndrome. That could bring new discoveries that would help any of those common symptoms, which are illnesses faced by millions.
So, a fundraiser is planned this week to raise money for Alstrom Syndrome International. It's a barbeque with four bands and an auction at 4 Bar K this Saturday at 7:00. For ticket information, call 786-4903. If you would like to learn more information about ASI, visit www.alstromangels.com event tickets or www.alstromangels.eventbrite.com
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