Bakersfield family looking for donations to help son's rare disease

Posted at 4:59 PM, Jul 11, 2017
and last updated 2017-07-13 19:53:47-04

Everest Hensley Tanner is one of 200 people worldwide who have Wiedemann-Steiner Syndrome.


Everest is a nine-year-old boy who developed health problems from the day he was born.


“Everest had lots of testing, surgeries and even had hip surgery when he was a year old,” Brandi Tilmon, Everest’s mother said.


Doctors did not have answers for the Tanner family until Everest took a simple blood test in April 2017. Everest was diagnosed with a rare genetic disorder -- Wiedemann-Steiner Syndrome.


“Our genetic doctor didn’t know anything other than the genetic testing and this is what the diagnosis is,” Tilmon said.


Wiedemann-Steiner Syndrome affects developmental delays, sleeping problems, and feeding and dental issues, just to name a few.


The Tanner family is raising money to attend a conference in Orlando, FL where they will be able to meet two of the world’s leading researchers. Brandi, and other families, will speak one-on-one with the doctors to find out what the future holds for Everest.


“It’s one of the most surreal things… ever,” Tilmon said.


The Tanner family is greatly accepting donations. Checks can be made payable to Everest Hensley Tanner and dropped off directly at any Wells Fargo bank.


You may also contact Brandi Tilmon where she will pick up any donations or for mailing instructions.


“It would help if we raised a lot of money to go to Florida to meet the doctors and see my friends,” Everest said.


The family needs to raise about $4,000. This will cover the one time conference fee, airfare, hotel and lodging.