POWELL (WATE) – Mabry Kate Webb was just a week away from turning 11 months old when she died on Saturday.
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Mabry Kate had a rare genetic condition called Krabbe Disease.
It’s a disorder that affects the protective myelin coating of nerve cells in the brain and throughout the nervous system.
In most cases, symptoms of Krabbe develop in babies before six months of age.
Mabry Kate’s developed when she was three months old.
There is no cure for Krabbe, but stem cell transplants from umbilical cord blood have shown success in babies treated before symptoms start.
The Webbs have fought for newborn screening in Tennessee.
So far, their efforts have succeeded in getting a newborn screening bill filed by State Representative Bill Dunn.
To show your support for the bill, and learn more about it here.
Friends of the family have organized fundraisers to offset the cost of mounting medical bills and funeral expenses.
On Feb. 16 family and friends will participate in Chili’s Give Back Night at 6635 Clinton Highway from 5 p.m. to 9 p.m.
On Feb. 28. an indoor yard sale will be held at Jubilee Banquet Facility located at 6700 Jubilee Center Way. If you have items to donate to the yard sale, please send an email to Miraclesformk14[at]gmail[dot]com
Funeral Services for Mabry Kate Webb will be held at Powell United Methodist Church on Feb. 11 at 7 p.m. The wake will be held from 5 p.m. to 7 p.m.
The family is requesting that everyone wear the royal blue.
In lieu of flowers, donations for Krabbe research may be made at http://www.huntershope.org
For more information on Mabry Kate’s story, visit Miracles for Mabry Kate on Facebook.