My Grandson Edward - The Superhero

My Grandson Edward, the Superhero

You are my sunshine

My only sunshine

You make me happy

When skies are gray

You'll never know, dear

How much I love you

Please don't take

My sunshine away

My grandson was a superhero. I don’t mean that in a metaphorical sense. I am being quite serious and literal. Most definitions of a superhero describe someone who possesses superhuman powers or special abilities beyond those of ordinary people, and my grandson Edward had that. He achieved something no human has ever done before. He lived for five and a half years with an extremely rare condition called Mitochondrial Depletion Symptom 3.

Just so you understand how extraordinary that is: the life expectancy of children born with this condition is normally less than a year. When Edward was born on the 31st of August 2018 the doctors estimated he had 3 months to live. Little did they know, my little Eddie Spaghetti would beat the odds and make all of our lives better, brighter, and more joyful.

Mitochondrial disease, or Mito for short, is not talked about enough. It is possible this is the first time you are learning about it. So, I’ll try to explain what it is without using too many overwhelming medical terms.

Mitochondria are special structures you can find in every cell of our bodies. Their main purpose is to create energy that allows our organs to function. They quite literally power the cells of our body, which is why mitochondria are often called the powerhouses of the cells.

Sometimes mitochondria fail to function properly, which means they cannot convert food and oxygen into energy. That, in turn, leads to cell injury and even death. Cell injury that occurs systemically results in organ failure. Usually, the organs that need the most energy, like brain, heart, muscles, and liver, are affected first.

That is what happened to Edward. At 45 days old he had to get a liver transplant. And that was just the start of his tumultuous journey, one that inspired not only his family members but even healthcare professionals and researchers. Which brings me to the next point in proving that my grandson was a superhero. The distinct feature of a superhero is not only that he inhabits superpowers, but that he uses them for the good of other people.

The way Edward navigated his life with mitochondrial disease was so unique that his experiences and treatments served to help deepen the knowledge of the condition and advance the medical field.

For one, it is thanks to Edward, among other kids, that mito cocktail was created. Mito cocktail is a custom combination of vitamins and supplements that helps people with mitochondrial disease to improve their energy production and alleviate some of the symptoms.

Thanks to Edward’s experiences, other kids were able to get access to medical equipment that is not generally provided for people with this condition, such as beds, chairs, and standers. Not to mention that it was through working with Edward that the wonderful nurses and physicians who helped us along the way learned how to treat kids with Mitochondrial Depletion Symptom 3 in better, more effective ways. Edward’s unique journey is still changing the medical field, even after his passing.

Edward was an extremely wise, emotionally intelligent, and empathetic boy who could read people instantly and learn from them. When Eddie figured out one of his teachers wouldn’t press him to exercise if he was tired, our little boy would pretend to be asleep, then laugh out loud the second the door closed behind the teacher. Thinking of moments like this always brings a smile to my face.

That’s what Edward was so good at — making any space brighter, playing tricks to make people laugh and see the good even in the darkest times. He loved to swing, be outdoors, and listen to music whenever possible. His favorite song was You Are My Sunshine which is so sweet because he was and is our forever sunshine.

The thing about mitochondrial disease is that while there are treatments and dietary supplements, like mito cocktail, which help alleviate the symptoms and slow down the progression of the disease, there is still no cure. The best hope to find one is to keep funding research and clinical trials. This is why I created a soap called — appropriately — Sunshine. When you buy this bar of soap, I donate 10% of the profits to the United Mitochondrial Disease Foundation.

I make this soap by hand using only natural ingredients and a traditional cold-press method. It features orange and bergamot essential oils, as well as organic coconut milk and cocoa butter. By purchasing our Sunshine soap, not only do you get something special for yourself, but help other people — something Edward was strongly behind, without ever realizing it. Because when it comes to something as big as finding a cure for a condition that affects children around the world, even superheroes need help sometimes.