The Weakley County community will be joining together to provide help to one of its youngest heroes who fights everyday for life and normalcy against a rare and fatal disease.
Cole Tanner is the son of Johnna and Chris Tanner of Martin and is a typically active seven-year-old child who happens to have a very rare neurological movement disorder called Neurodegeneration with brain iron accumulation (NBIA).
The disease is very progressive and is 100 percent fatal over time. Iron builds up in the movement part of the brain (the globi pallidi) and causes a variety of symptoms such as slow writhing, distorting muscle contractions of the limbs, face or trunk; choreoathetosis (involuntary, purposeless jerky muscle movements); mental retardation, facial grimacing and visual impairment; confusion, disorientation, seizures stupor and dementia; painful muscle spasms; dysphasia (difficulty speaking); dysarthria (poorly articulated speech), ataxia (inability to coordinate movements), spasticity (sudden, involuntary muscle spasms) and muscle rigidity (uncontrolled tightness of the muscles).
Tanner exhibits some of these symptoms and must take medicine for them called Deferiprone (Ferriprox), a chelator.
He also wears specially made braces that aid with walking and takes physical therapy and karate, but the medicine is the key. Whether or not it will cure the disease remains uncertain, but for now it slows progression and gives doctors more time.
Deferiprone is the only chelator that crosses the blood brain barrier and goes to the brain, binds the iron and removes it from the body.
While Tanner takes the medicine, he must have blood work done on a weekly basis and is monitored by his physician for side effects.
Though Tanner has shown signs of improvement the last couple of months, he hasn’t been administered medicine in about seven weeks and regression is beginning. Because of the rarity of the disease, medicine is all but impossible to find in the United States – it must be obtained from countries like Argentina, all Middle East countries, the Far East/Pacific East, Japan, China and the Philippines.
The medicine is either shipped or picked up by Tanner’s mother, so the expense adds up greatly.
Eventually, doctors expect that Tanner’s disease will leave him bed-ridden and unable to move with painful muscle spasms or worse.
In order to help raise money for medicine and new braces as Tanner continues to grow, community members, friends and family have planned a fundraiser for Tanner.
Beginning now and ending on March 26, there will be a break-a-thon and a pork loin and baby back ribs fundraiser.
At the price of $2 for a small board, $3 for a medium board, $5 for a large board and $25 for a concrete block, participants can use their karate skills to break boards in the name of raising money. The breaking will take place at 11 a.m. on March 26 and all donations will be accepted and appreciated.
In addition, for $20 a person can purchase either ribs or pork loin.
Purchases must be made by March 14 and orders can be picked up at the American Legion or Evolution Martial Arts on Saturday, March 26. Delivery options are also available. All meat will be cooked by S.A.L. Cookers.
For more information, call Stephanie Watkins at Evolution Martial Arts at 731-819-1776.