DONATE to the John Garrett Evans Family Research Fund

The John Garrett Evans Family Research Fund

john-garrett-evans-1“You’re Pretty!” has been heard by most every lady who meets Garrett. He certainly knows how to make a person’s day. Garrett is the happiest person you could ever meet, and he does not let Mitochondrial Disease steal his spirit!

 

Garrett was born a happy and healthy boy weighing nearly nine pounds. He was a very content baby and remained on the 90th percentile growth curve until he was seven months old. That is when he began to experience episodes of screaming and crying at night. During this time, he would not use a bottle or sippy cup and would panic if baby food or other solids were placed in his mouth. His parents watched as he began to fall behind on the growth chart. He started to fall farther behind on all developmental milestones as he passed his first birthday. Numerous visits to the pediatrician yielded no answers and more questions.

 

That is when the search started for a physician or team that could answer the questions related to his chronic constipation, inability to eat besides nursing, screaming, hypotonia (low muscle tone) and developmental delays. After a month long inpatient visit for testing and observation, Garrett had his first g-tube placed and his first muscle biopsy taken. After a year with his g-tube and hours of therapy every week, Garrett began eating regular food and was able to have his g-tube removed. The search for answers led Garrett’s mom to rely on online communities of mothers of similar children who looked at the lab results, muscle biopsy and clinical notes and recommended mitochondrial disease be considered.

 

Garrett’s family traveled to Houston, Texas, to meet a mitochondrial disease specialist. It was confirmed through a second muscle biopsy that Garrett appeared to have a form of mitochondrial disease. The Evans family finally heard the term “Mitochondrial DNA Depletion” when Garrett was five years old. While this diagnosis is not encouraging, and means he is running out of the DNA needed to make the mitochondria needed to sustain his life, his family finally knew where to turn. They turned to the United Mitochondrial Disease Foundation.

 

In 2010, Garrett and his family moved from Louisiana to Idaho to give Garrett a break from the heat and humidity his doctors warned could be dangerous for his body to endure. In Idaho, Garrett has grown stronger and healthier. In 2013, his chronic constipation was resolved by a procedure called an appendicostomy. This procedure allows his caregivers to give an enema through his stoma in his belly button so he can have a daily bowel movement. He had a g-tube placed so that he could receive adequate nutrition. Since these two procedures, Garrett has gained enough weight to look and weigh-in healthy as well and clean out his gastrointestinal tract to maintain his colon health. Garrett takes 23 doses of medicines and supplements daily, continues with speech and occulational therapies, and loves attending a local public school in a special education class.

 

More than anything, Garrett loves music, Legos, his Wii games, and playing with friends and his dog, Sammy. He is a very busy boy who is outgoing, bright, but struggles with the effects of mitochondrial disease affecting his brain, muscles, and G.I. tract. Garrett may not know a stranger, and we hope beyond hopes that someday he does not have to know mitochondrial disease.

 

We are eternally grateful to the UMDF and our team of doctors who are doing all they can to help our son and all of those who struggle with Mito.

DONATE to the John Garrett Evans Family Research Fund