Family Finds Meaning in Mitochondrial Disease and Death of Their Son

The death of a loved one is never easy. It is difficult both to experience and to understand. Mark and Julie Russel lost their son Harry to mitochondrial disease when he was only three years old. Together with their daughter Ella they are resolved to keep learning from Harry. They are resolved to find or create meaning and triumph from fathoms of grief. Read more below, or follow their story as told by the BBC here to learn more.
Harry suffered from mitochondrial disease. Since mitochondria provide energy to cells throughout the entire body, many forms of mitochondrial disease exist. The common result, however, is that mitochondrial disease causes loss of energy within cells. When cells have insufficient energy they cease to function properly, and may even die. Organ systems begin to fail. Seizures, strokes, developmental delays, and inability to digest food can all be symptoms of mitochondrial disease. Without energy from mitochondria, the body cannot sustain life. To learn more about mitochondrial disease, click here.

That’s the technical version. But Harry was able to continue to be more than that, largely thanks to his supportive family.

To understand Harry’s story, we need to go back a little further. Mark and Julie Russel had a daughter before Harry. She was stillborn. The family wasn’t sure how to cope afterwards. They weren’t sure what tomorrow would bring or where hope would come from. Mark says that’s when Harry came along. From the moment he was born, Harry was a source of hope and inspiration for his family.

“Harry made a huge difference to our lives,” says his mother, Julie.

Even though the Russel family didn’t get much time with Harry, they seem to have made every moment count. They’ve stored up many happy memories. More than that, as Mark explains, they’ve found meaning in what happened to their son.

“When you’ve been through something like we have,” Mark says “then it has to be for something.” “You have to make Harry’s life mean something…” he continues.

It’s about learning, Mark explains. Not just the Russel family learning, but about the people around Harry learning. Even the specialists that helped with Harry’s illness had something they could learn from Harry. When Julie talks about the difference Harry made to her life she sees Harry having had a legacy. He was able to teach her so much in such a short while, and if he can continue to impact the lives of others “then it just makes it all worthwhile.”

“Harry taught me the virtues of patience, trust and gentleness,” Julie says.

At an earlier point in the interview, Julie reflects that Harry’s life, his influences and lessons, will shape the rest of their lives. She seems to experience genuine pride and joy at what her son accomplished, and what her family has found through their experiences with him.

She concludes that Harry has given them a lifetime of beautiful memories.

Harry lost his battle to his illness at the Keech Hospice Care in Bedford. The Russel family continues to hold events there to celebrate the life of their son and raise support for the charity that helped him.

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