Despite that Rob Drescher was born with a vascular disease that caused him to be paraplegic in his early teens, nothing has stopped him from looking up and moving forward. He and his family have been supported since the beginning, and when the time came to acquire the Indego exoskeleton that would benefit his health, the community stepped in with a fundraiser for the advanced technology. The fundraiser was a success just at the turn of the new year. And now, not only has Rob been impacted by last year’s journey, but his is able to make a further impact on others.
The Impact of Blue Rubber Bleb Nevus Syndrome
Rob was born with Blue Rubber Bleb Nevus Syndrome (BRBNS) but was not diagnosed until he was 14 years of age. BRBNS involves vascular masses and lesions in the body, and Rob has a large mass in his chest cavity that eroded the protective layer around his spinal cord. This is what caused him to be paraplegic.
The diagnosis was sudden. Rob spent most of his 8th-grade year in the hospital, while his mom, Sharon, left her job to spend time with him there. “It turned our lives upside down.” She said. “It was difficult those early years, filled with anger and confusion.”
Sharon, however, had the goal for Rob to remain as active and involved as possible in school. He got into adaptive sports, playing with other children who were going through similar situations as she would sit with other parents on the bleachers and spectate. In time, Rob also started to mentor newly injured individuals, knowing that they need the support just like he did at the time.
There was also the support of Rob’s group of friends he had through school. During all the times that they hung out together, they did not let the wheelchair get in Rob’s way. He was still experiencing an eventful teenager’s life thanks to them, and sometimes, the wheelchair even came home with dirt covering it from their activities. The family doesn’t know what they could have done without these friends. To Sharon, “Nothing was an obstacle when they were in the picture.”
Therapy: Discovering the Exoskeleton
As Rob and Sharon adapted to the new reality that BRBNS brought to them, they were looking into solutions such as stem cell therapy. However, after about six years of waiting for the therapy to be available, they decided to change their thinking of how to proceed. Rob was going to need to be healthy whenever the therapy would be available, so he and Sharon started looking into exoskeletons to help prepare him for it.
The first exoskeleton that Rob started with required a big commitment: driving out of state every week for therapy, from Virginia to Baltimore, Maryland. But was worth it, as Rob was more excited about therapy than ever before, and the technology was simply a positive impact.
Six months later, the family heard that the Indego Exoskeleton was arriving to Sheltering Arms in Richmond, Virginia. The family jumped on the opportunity, getting in contact with Parker Indego, and using Indego for therapy at the location. Things were truly beginning to make a difference, for both Rob and Sharon.
A mother was able to see her son stand and walk, gaining the experience of realizing how much her child has grown. They say you watch your children “pass you by,” and Sharon had believed she missed out on it. Yet the exoskeleton brought that moment to her. “When he stood up and was towering over me and looking down at me, that lit me up.”
For Rob, the family saw a lot of physical and emotional health benefits. He was feeling better, he was doing better, and he loves being his true height of six feet tall.
It was then decided that it would be worth acquiring the Indego exoskeleton for further use.
A Community Coming Forward
Paired with the scenery was a rollercoaster of emotions. At first there was anticipation and frustration due to a delay in starting the demonstration. Yet in the end, that emotional buildup only led to an empowering sense of triumph between the audience and event organizers, when Rob was finally able to walk at the event. To Sharon, that day could not have turned out any better.
The most memorable moment was in December of 2019, when the campaign was beginning to reach its deadline, and there were moments of doubt.
The fundraiser was just about $10,000 short at the time, and there was concern that the holidays would negatively affect the campaign efforts. However, the community and campaign still had one big pivotal moment for Sharon and Rob still.
In mid-December, Sharon was at a gift exchange with her friends and many others. She received a phone call from a family in Richmond that was following their campaign and had fallen in love with Rob’s story. The family donates money once a year to large organizations through their family foundation, but this time, they decided that they wanted to make an impact on one individual. That individual was to be Rob. With their donation of $10,000, the fundraiser was a success.
There Sharon was, in the hallway, crying as her friends gathered around her and asked what was wrong. Everyone learned that the tears were of joy though, and within the next few minutes, Sharon wasn’t the only one that was crying.
Shortly after, Rob was on speakerphone to hear the news. There were cheers, there were many emotions, and it was another moment that it all came together beautifully. Thus, the Indego exoskeleton was shipped to Rob by the end of December.
Goals and Progress with the Indego Exoskeleton
It is now one month into using the Indego exoskeleton. He is certainly seeing the benefits of it with his health improving significantly. For example, he had a pressure sore for five years that finally closed, now that he’s upright. There is also improvement on his bowel and bladder as they are becoming more regular, and he is walking much more and even on uneven .
Now that the fundraiser is accomplished, a new goal has arisen. Rob hasconnected with another individual, Adam, who owns an exoskeleton, and travels around the country to complete races with the equipment. Adam reached out to Rob and asked if he was interested in participating with him; whether it is an entire race or finishing the last stretch together. This sparked the new goal for Rob to walk a mile in April of this year.
The Team Rob Mission Continues
Rob is currently performing demonstrations of the Indego exoskeleton at events with Parker Indego. While he also still mentors newly injured individuals as he has been, he hopes to help others who are interested in the exoskeleton to acquire and use it. When the fundraiser was running, the mission to stand with Rob came into existence. Despite that it is almost a year later that it started, Rob does not want to see the mission end, but instead, evolve into something new. The initial purpose was to fundraise, so while he and his family are still confirming how to move forward, all Rob knows is that he wants the mission to keep going in supporting others in a similar situation as his.
As for Sharon, there is incredible gratitude for the community that supported her son. “I can’t say enough that support from the community is everything. People are good and want to help, whether it’s financially or in another supportive way. If you have a goal, go for it, and don’t be afraid to ask.”
This is the message that Sharon aims to advocate when she tells the story of the fundraising success, a fundraising success that now has her son standing, walking, and continuing to push to help others.
We at Parker Indego stand with Rob, and we look forward to seeing his story press on.