An 18th Birthday Cake for Mikey

Being born with mitochondrial disorder meant Mikey’s life expectancy was only 10 years old, but Mikey keeps thriving and recently celebrated his 18th birthday with help from Icing Smiles. Learn more about his story.

Mikey’s medical journey started early when he was diagnosed at just 15 months old. His parents were told his life expectancy was seven to 10 years. Mikey has kept thriving beyond that thanks to a number of doctors, procedures, and an incredible support system, but it’s still tough on him and his family. Although some may not be able to imagine living with a debilitating illness, it’s the reality of Mikey’s daily life.  

Mikey’s mom, Kathi, has been very open about his journey, and we’re honored to be able to share some of it as well. 

One of the side effects of Mikey’s critical illness is that he goes through life with a feeding tube to nourish him and a colostomy bag because his colon does not function. These, along with the 16 medications he takes daily, have helped Mikey beat the odds and significantly pass his 10-year life expectancy.  

Although Mikey has continued to thrive, his mom, Kathi, points out that even though “he looks healthy on the outside, his body inside is not.” The things in place that enable him to go to school, go out, or do something fun don’t negate the fatigue Mikey feels. He’ll sleep for 15 hours to recharge for the next day. It’s one of the pros and cons of his disease; some days you would never be able to tell that his body isn’t working the way it should. 

What Is Mitochondrial Disorder?

Mitochondrial disorder is a genetic disorder that robs the body’s cells of energy, often causing multiple organ dysfunction.  

According to the Children’s Hospital of Philadelphia, the array of health concerns that can be caused by mitochondrial disorder include fatigue, weakness, metabolic strokes, seizures, cardiomyopathy, arrhythmias, developmental or cognitive disabilities, diabetes mellitus, impairment of hearing, vision, growth, liver, gastrointestinal or kidney function, and more.  

Spreading Awareness

Mikey’s mom has been an advocate for him in school as well as in everyday life. That advocacy has continued through her devotion to spreading awareness about mitochondrial disorder and the resulting complications and realities of living with this disease on their Facebook page. Her willingness to be transparent and explanatory about the reality of their family’s life has inspired the same spirit of promoting awareness in Mikey. 

In eighth grade, Mikey had to create a presentation, and he chose to do it about his feeding tube. Although autistic and developmentally delayed, he is acutely aware of the things that are on his body and what they do for him. By creating this presentation, he chose to share why a feeding tube is important and what that means for him. Mikey’s tube is a part of him, and he is proud of who he is and what that means. 

Celebrating 18

Despite years of twists and turns in his medical journey and dealing with COVID, Mikey celebrated his 18th birthday at the end of April. 

His mom says that although he is selectively mute, his smiles are worth it. That very smile shined when he received his birthday cake from Sugar Angel Chavella Wellington. 

Here’s a snippet from the post Kathi shared on his birthday, April 29th: 

“The doctors gave you a life expectancy of 7-10 years old and here you are thriving with the help of your feeding tube, growth hormone, all your medications, nursing care, and modified education. The support you get is the best so I can work to give you what you need too. Gabi Harris is the best big sister who will always be there for you. I am proud of you and how far you have come. I hope you have a wonderful day today Mikey.”

When asked for feedback about her experience with Icing Smiles, Kathi simply said, “We love you guys.” Mikey’s family appreciates Icing Smiles and the people behind it that make delivering these smiles possible.

Get Involved

Volunteers make cakes like Mikey’s possible. See how you can get involved with Icing Smiles! From volunteering, baking, or attending an event, there are numerous ways to help Icing Smiles.