Alexandria Fire Department Honors Youth with Rare Genetic Disorder

The Alexandria Volunteer Fire Department paid tribute to a very special 17 year old boy Saturday by making him an honorary member and giving him a ride around town in one of the city’s fire engines.
Tanner Malone, son of Shannon and Julie Malone of Alexandria, was presented a plaque and tee shirt by Alexandria Fire Chief Brian Partridge. Other members of the department were also on hand for the occasion.
Tanner was born with a very rare genetic disorder and has undergone numerous surgeries and treatments for his condition.
“Tanner was the only one at Vanderbilt Children’s Hospital with this condition and there were actually only ten other kids worldwide with it. His doctors at Vanderbilt actually call him their question mark. We just don’t know why this happened to him but God knows why,” said Julie Malone, Tanner’s mom who spoke with WJLE Saturday.
“It’s the fourth chromosome. Tanner underwent open heart surgery when he was six weeks old. He had two cranial surgeries when he was six months old and eight months old. He was hospitalized the first five years of his life numerous times with pneumonia and he had a bad case of asthma. Six years ago he went in for a six hour brain surgery to remove almost all of the right side of his brain. He went back in on the next week for an eleven hour brain surgery. After those two brain surgeries, he went in to have a shunt put in because fluid was building on his brain. His liver is now being affected because of the high dosages of medication he is taking,” said Julie.
Although he can’t attend school like other students, Tanner is home schooled. “He has had a homebound teacher, Lori Rogers since he was in kindergarten. Now she comes to our house because he has an immune deficiency. He can’t have MMR shots, Chicken Pox vaccines and things like that. They have to be extra careful with him. But he has actually been going to school with her, usually one day a week for about four hours. She goes with him to kind of get him out of the house and let him enjoy being with other kids. He is mentally with probably a three or four year old,” Julie continued.
Through it all, Tanner is a happy teenager with an outgoing personality and he makes friends quickly. “This kid is amazing. Tanner never meets a stranger. He is just the happiest kid ever and is just a blessing to everyone,” Julie said.
For his 16th birthday, Tanner received almost 400 birthday cards. “He loves to get mail. He thinks that is just grand. He is so loved by so many in DeKalb County,” said Julie.
After he healed from his surgeries, Tanner and his family got to take a trip to Florida for a week. A wish granted to Tanner by the Make A Wish Foundation.
As Tanner continues to receive treatment for his condition, his family asks that you keep them in your prayers. “We had no clue when I was pregnant that anything was wrong. Then after we had him they were telling us everything that was wrong. We were just devastated. A lot of times it’s a tough road and it seems like there is always something new that comes about. We feel like we get one thing fixed and something else messes up. Now its with his liver. But God has a plan. Always pray for Tanner,” said Julie.

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