Cassie and Lynn Johnston's daughter Bryce has Alstrom Syndrome which they said is virtually unknown to most people.
"Alstrom Syndrome is one of the rarest diseases in the world. There have only been, as of today, less than 900 cases documented in medical history."
Alstrom Syndrome is a genetic disease that affects every part of a child's body with complete blindness, deafness, type 2 diabetes, kidney and liver failure, congestive heart failure and Chronic Obstructive Pulmonary Disease.
Bryce Johnston was diagnosed with Alstrom Syndrome when she was 2 and the Johnston's said they consider themselves lucky.
"Catching it at three like we did with Bryce has put us on the correct path where most of these kids don't get diagnosed until they're 14 or 16 years old...by that time a lot of the medical complications have already presented and we lose a lot of kids before ever even getting diagnosed."
Because Alstrom Syndrome is so rare, less than 100,000 dollars is dedicated to research and treatments for children each year.
The Johnston's knew that wasn't enough and so they began a yearly Alstrom Angels Benefit Dinner.
"At our first benefit dinner we netted over 41,000 and when we sent the check up to the lab to be used for testing it was the largest check they had ever received for testing...we've been able to help test 68 children that were suspected of having the syndrome and 60 families now have a confirmed diagnosis for their child."
The Johnston's said the Benefit has live music, food, and live and silent auctions.
Since KAMC first met Bryce a year ago, her eyesight has deteriorated and her liver is starting to give her some trouble but the Johnston's say she is as bubbly and outgoing as ever.
"Well, challenging at times, like any five year old, she all the sudden has never met a stranger and is loud and just hams it up."
And that big personality is what the Johnston's call the bright spot of Alstrom Syndrome.
"Although these kids are dealing with unimaginable medical complications, probably more medical complications than three people with battle in their entire life combined, their intelligence, they are very very smart and their witty and so of all the things Alstrom Syndrome takes from our kids it leaves us with the best parts of them."
The Alstrom Angels Benefit Dinner is this Saturday February 22nd at Four Bar K, 302 E 82nd St, Lubbock, TX 79404, from 7 to midnight.
Tickets are 50 dollars for adults and 35 dollars for children if you buy them in advance online at www.alstromangels.com and that includes the entertainment, dinner, beer and wine, and an event t-shirt.
Ticket prices go up 10 dollars at the door.
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