A means to END (NF)

Twitter: @Nationals | Facebook: Nationals | Instagram: @Nationals

by Amanda Comak

It began with a tweet. A simple request: “Pray for me.”

Washington Nationals shortstop Ian Desmond was new to Twitter in 2012 when he saw the tweet come across on an account called Unashamed Athletes. He replied. The person on the other end wrote back. A friendship was born.

Desmond didn’t know anything about Ethan Brown the first time he corresponded with the now-22-year-old.

The first time he prayed for him.

300x400_ianHe didn’t know about his quick wit or his personality bursting with life. And he didn’t know about the Neurofibromatosis that was attacking Ethan’s body, causing tumors to grow along his nerves and forcing his body to belie the bubbly young adult inside.

He didn’t know what Neurofibromatosis was to begin with.

May is Neurofibromatosis Awareness month, and in conjunction with that, Desmond set out this season to honor his friend and bring a voice to those largely without one. Neurofibromatosis is not exceedingly rare. It affects one in every 3,000 births. It doesn’t discriminate based on sex, race or nationality.

It is also mostly unknown – to the public and to the scientific community.

“NF, to me, and to a lot of people, is something you’ve never heard of,” Desmond said at the start of the month as he kicked off an Indiegogo campaign to raise money for the Children’s Tumor Foundation. “I want to get the word out.”

The campaign, the brainchild of Desmond and a group of fan bloggers known as The Nationals Archive, reached its $10,000 goal in the first five days of the month and is closing in on $30,000 as the end of the month nears. But that was always secondary to the real aim of the campaign: spreading the word about NF.

“There needs to be a cure,” Ethan said in a message when asked the one thing he wanted people to know about NF. “I went from walking and running to being in a wheelchair or crawling (in a short amount of time).”

The first time Desmond met Ethan in person was at Turner Field in Atlanta. The Nationals’ shortstop reached out his hand to shake Ethan’s. With a tumor growing on his hand, Ethan recoiled and screamed as if in pain. Desmond froze. Ethan began to laugh.

“That was when I knew, this kid is something special,” Desmond said. “If you could read our conversations you’d have no idea this kid was going through any kind of life struggle.”

Over the winter, Desmond and Ethan agreed to get matching tattoos of a design they came up with together. Ethan already has his: a crest of blue and green puzzle pieces – blue and green for NF colors and puzzle pieces because the condition remains a mystery – and two bats behind it to represent Desmond. Both of their initials are in the crest, and beneath it is a banner: End NF.

“I never thought in a million years I’d be friends with an MLB player,” Ethan said. “He is like a brother to me.”

Desmond has led and participated in plenty of charitable causes in the past. He did most of those quietly, preferring to fly under the radar. But this one was different.

“It’s just the fact that it was (a cause) that needed it,” Desmond said. “It just needs to be spread. I don’t know if it’s that Ethan’s involved and I have a special place in my heart for Ethan, but it’s also that the Children’s Tumor Foundation was the first place to reach out to him, and to be the first (organization) on the scene speaks volumes about them.

“It was an opportunity to help (CTF) out and to help out people who really don’t have a voice, the people who suffer from NF. It is something I want to do for NF. I want people to know what NF is for all of the people suffering from it.”

For more information, visit nationals.com/endNF

A version of this story first appeared in Inside Pitch.

6 Comments

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Amanda, Thank you for writing such a thoughtful and ACCURATE piece on NF, a condition my 16 year old son lives with as well. When I saw that Ian Desmond was going to join our campaign to #EndNF, I was beaming. It speaks volumes about the man’s character, that he befriended Ethan and took that friendship to the level of creating public awareness for Neurofibromatosis. I hope to someday meet him and shake his hand so that I can thank him personally.

Pingback: A way to END (NF) « Curly W Stay | Sports News

My 16 year old son Bailey also has NF2 like Ethan that was diagnosed at age 10. In the past 6 years he had 8 brain tumor surgeries and 1 spine tumor surgery. he is deaf in his left ear from a hearing nerve tumor and has a platinum eyelid weight to help with facial weakness from a facial nerve tumor. He is also an AP/honor roll student recently admitted to the national Honor Society.he has raised over $50,000 for Children’s Tumor Foundation to help fund research for a cure for NF. bailey is this year CTF NF Ambassador. We admire Ian Desmond and thank him for all his amazing efforts to #endNF and would love to meet him to shake his hand some day.

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Pingback: Ian Desmond; The Individuals’s Captain « Curly W Reside | Sports News

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