Ian Desmond, Rockies help raise awareness for neurofibromatosis

Credit: CTF Colorado

Featured Image Credit: CTF Colorado

During batting practice prior to Tuesday night’s game, Ian Desmond and the Colorado Rockies hosted a group of families from the Children’s Tumor Foundation in a move to raise awareness for neurofibromatosis and to give the guests a much-needed escape from the trials that the disease poses.

Since 2012, Desmond has become an integral part of the community, using his platform as a Major League Baseball player to help raise awareness and, in turn, donations for an organization near and dear to him.

Michael Lynn, a board member of the Colorado chapter for CTF, attended the event and the game with his family. As the father of a child with neurofibromatosis type I, Lynn said that the event, as well as Desmond’s involvement in raising awareness, has meant the world to him and his family.

“It’s tremendous that someone like Ian is so involved with it, because there aren’t that many people that know about neurofibromatosis, and it’s more common than cystic fibrosis and muscular dystrophy combined, but it’s not very well-known, so to have someone on such a large stage as Ian be so involved and take such passion to get the word out there has been a tremendous boon for the organization for anybody with NF,” Lynn said.

“I know he’s so very well-liked among the CTF community and the NF community around the nation for getting this word out. When he was with the Nationals, when he was with the Rangers, and now here with the Rockies, he’s had a profound impact with all the communities there. He’s such a national platform for us to raise awareness, and it’s so tremendous for everybody.”

Neurofibromatosis affects nearly 1 in every 3,000 births, varying between type I, type II, and schwannomatosis. Those who suffer from it carry the potential to grow lumps and tumors, usually benign, all along their peripheral nervous systems, which often require numerous surgeries to be removed. With the tumors often come additional health problems, as is the case with 9-year-old Erik Lynn, who also suffers from epilepsy and a hampered development.

“We’ve had several trips to Children’s Hospital, we’ve had several overnight stays and he’s had several operations and surgeries,” Lynn said. “It’s been a tough road so far for him, so hopefully we’re doing everything we can and hopefully I’m doing everything I can as part of the board to get the word out there. We really strive for awareness in the local community and also to help the Children’s Tumor Foundation find a cure for NF.”

Desmond began his involvement with End NF and CTF five years ago when he met a man named Ethan Brown, who would later become a good friend.

“It started in 2012,” Desmond recalled. “I got on Twitter and I started following things I had interest in, and I followed a feed, ‘Unashamed Athletes.’ This young man, Ethan, sent out a prayer request that Unashamed Athletes retweeted, and at that point I said, ‘Hey man, I’ll pray for you, no doubt.’

“He had a big surgery coming up. I think it was a brain surgery and basically from that point on, we became really close friends. I’ve seen the way that it affects him, I’ve seen him go through quite a bit physically, emotionally, and his family, the same. I think we all as players want to make an impact, and at that point I had a high school diploma, my family’s relatively healthy, and I just felt like all I could give back was to baseball.

Photo Courtesy: Ethan Brown

“After meeting Ethan and seeing how many and how severe the impact is on families that suffer from neurofibromatosis, I felt like this is something I can get behind. Since then, with the help of a lot of really good people, I’ve been able to join forces with them and be a part of that community, spread some awareness, raise some money, and get to build a lot of really good, meaningful relationships.”

Since the pair first met in 2012, Brown has seen his condition worsen as he’s had to make some difficult decisions. Desmond has been there to support him through it all.

“The first time that we met, Ethan could walk, talk, hear and was fully-functional for the most part,” Desmond said. “Since then, he’s basically been confined to a wheelchair. He’s been in therapy to walk again, which, to his credit, he’s made a ton of progress, but he’s still got work to do and he knows that he’s lost his hearing at times, [and the] majority of his vision.

“He’s got NF2, so he’s got a tumor on each side of his brain stem, and they’re going, and you can do radiation to shrink them. You got to go in and do surgery. At one point, he had a choice. If they go in on one side, he’s going to lose his ability to have motor skills functionality, or if they went in on the other side, he would lose his hearing, so he chose his hearing.”

As the friendship started to blossom, Desmond and Brown found a special way to commemorate their relationship while simultaneously keeping the End NF mantra close to their hearts – literally.

“I think we were on the field maybe the second or third time that we met, we were in Atlanta, and Ethan was there, it was probably a couple-hour drive to get to the game, and we were in BP and he was kind of checking out my tattoos,” Desmond said. “I was like, ‘Man, you’re too scared to get a tattoo.’ He was like, ‘You know what I go through? I can get a tattoo.’ And I was like, ‘Man, whatever tattoo you get, I’ll get the same tattoo.’ At the time he had no tattoos, and I don’t think he ever thought about getting a tattoo, but I think when he said that, it kind of sparked him to do it.”

The two ended up getting near-identical tattoos of a coat of arms emblazoned with their initials and “End NF” inked into their forearms. Desmond proudly wears his on his left arm.

Over the years, Desmond has partaken in his fair share of NF awareness events with the Washington Nationals, Texas Rangers and now, the Colorado Rockies.

“It’s great,” Desmond said. “I think the original idea was to get people from the community together so that they could share their experiences – maybe a family going through something, maybe they had a doctor – and some sort of insight that might help another family. It can get them together and help them realize that, ‘Hey, we’re not alone in this.’ It’s been great. The families really enjoy coming to the ballpark. It gives them a little bit of an escape just like it gives me an escape, so to share that with them is great.”

When Desmond first signed with the Rockies, Lynn and his family got the chance to meet with him and are grateful for the consciousness and donations he’s brought in for the organization. With successful clinical trials in the works and a possible cure right around the corner, those donations are more important than ever.

“Every year, we’ve had an NF night for the Rockies here, and so when Ian signed with us, the Rockies gave me a call, knowing I was involved with [CTF] and talked to me about this program that he wanted to have,” Lynn said. “We came the first night to talk to him and meet him, and I was on the field to receive the check from him for the $16,000, and through that I’ve been able to talk to him and his wife and kids. He’s been such a great guy.”

For his part, Desmond said he’s happy he can help make an impact for the NF community and a great friend, who’s already had a major effect on his life over the past five years.

“It’s crazy because I think from the outside, people think I’m making a huge impact on him, but for me, him and his family make an equal impact on my life and my family,” Desmond said. “In the NF community, they have this thing where it’s ‘I know a fighter.’ And that probably stands out the most, and it’s awesome to see how these families and these individuals who are affected by neurofibromatosis are so optimistic, and my family and I draw from that.

“There’s really nothing that can hold you back as long as you have a positive mindset. I’ve never met somebody with NF that felt down and out. They’re all smiling, they’re all, for the most part, happy and encouraged to know that there are people out there fighting for us. There is hope.”

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