The human spirit can be a remarkable force.
The least we can do is spread our own awareness of EB and of Robb & Drake E’s story.
What is Epidermolysis Bullosa?
Epidermolysis bullosa (EB) refers to a group of connective tissue diseases that result in moderate to severe skin blistering.
The skin is so delicate that any kind of rubbing can cause blistering. In the most severe cases, the blisters manifest not only externally, but also internally in places such as the stomach, intestines, esophagus, and in the respiratory system.
There are three main types of EB:
- Epidermolysis bullosa simplex (EBS)
- Junctional epidermolysis bullosa (JEB)
- Dystrophic epidermolysis bullosa (DEB)
To learn more about EB, click here.
‘They Had No Plan’
Robb recalls it all happening so fast and so suddenly — and once Drake E was diagnosed, there was nothing Robb or his wife could do except try to make their son comfortable.
“We saw them in the room on the internet kind of researching, and they had no plan other than to tell us what we already knew,” Robb said.
The spent a year of their lives in and out of hospitals and trading off sleeping there with Drake E. In the meantime, they also had to watch over their two other children.
And like many families who deal with the death of a young child, life became a living hell after Drake E passed away.
Robb sunk into deep despair and was consumed by anger; he and his wife separated; and he couldn’t keep a job.
But he then discovered bicycling and it turned his life around.
“I’m never going to get over the loss of him but how I dealt with it changed after bicycling,” Robb said. “It gave me space to deal with my emotions and anger.”
‘At the Edge of Hope’
Robb has braced bad weather and scorching heat, not only to cycle through his grief and pain, but also to fund raise for the Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) — a nonprofit dedicated to supporting the EB community.
In fact, Robb’s story was featured in the short film ‘At the Edge of Hope’ which screened at the DISORDER rare disease film festival.
While the pain must still be there for Robb — especially during the holiday season — it’s inspiring to see how he turned such deep grief into a tool for the greater good.
Keeping Robb and anyone who has lost a child in your thoughts.
