FB friends.... A long read but I need you all...... It is with a very heavy heart and tears, that I tell you about a young man named Ian Swarr. I am sharing an old post of mine from 10/20/12. I met this young man and his family on FBook. In a short amount of time he quickly stole my heart, earned my respect for being better, stronger and more positive than I was. His story taught me to have more belief and faith that God was in control and to except and embrace that fact. My little buddy is fighting for his very life tonight. He is fighting so very hard, but the family knows they should be prepared for the devastating reality that NO MOM should have to face. Ians mom, Delicia Bolin, Troy Bolin, and family, Jess Groff and Brenda Swarr Groff, have endured unending pain and suffering watching their little man endure unending torture every day of his short life and knowing there is no cure and that his life expectancy had already been surpassed. You see, Ian has Epidermolysis Bullosa. A rare, genetic skin disease. It is SO rare and SO incredibly painful. The ones with this disease are called Butterfly Children as their skin is as thin as butterflys wings. I was honored to be an advocate for Ian, if only for a short time. I want to tell you all a few things that happened so YOU can see that YOU can do more than YOU will ever know if YOU just do a little here and a little there. I started asking FB peeps to send cards and letters and to brighten his day......... You did. The call was put out that Ian LOVED all things fireman and so............... my wonderful HS friend, Ken Mesecher, who is a hardcore and high octane firefighter went into action. Ken not only sent a LOT of love to Ian, he sent a LOT of fire gear/stuff! Then Ken motivated his buddies and other units/departments to get involved and they sent stuff, and they got other units to do the same..... it SNOWBALLED..... There is even a video that Ken took of himself doing the SNOOPY dance with a Honey Boo Boo folder.... it was a contest to cheer up Ian, but Ken was a little too much into it....!!!! BTW, Kens video was the FIRST entry sent in! So another sweet friend of mine, Eileen Brennan Cress, who is the daughter of the Greatest Firefighter who ever lived, Tom Brennan, got involved. Now, those that know anything about Fire Engineering and the history of Tom will tell you that if Eileen asks for a favor, she gets it. I will never know how many departments took action for little Ian but at one time, Eileen had dozens and dozens of boxes in her living room that she was packing and repacking with paraphernalia sent from around the world! Eventually, her contacts also made their way directly to Ian and his family and he was on the radio, in parades as a grand Marshall and much, much more. Eileen will be embarrassed this is being said, but because of her, while Ian and his family endured excruciating days and nights, they smiled and laughed and felt loved because of her love for little Ian. Emeril Lagasse...... was adored by my little buddy Ian. So, I sent an email....... and another...... and yet some more and some Fbook contacts and then one day................. Emeril finally emailed me back and said, I am sorry I have taken so long to get back to you. My offices flooded in the hurricane, but I am sending Ian a box of stuff if that is still OK? Nuff said..... Thanks Emeril. A small side story... I was honored to meet on FB, the niece of some HS friends, Kim Evans and Ken Evans Jr.s, who was helping to send LOVE to little Ian. She was running around getting pics of firefighters and banners and overall a lot attention for Ian. She was even getting his blood pressure up as he thought she was so hot!!!! Being an honorary firefighter and Captain, I guess he knew he could handle this older womans heat! She had EB too. She was stricken with the same debilitating disease that ravaged his body and it ultimately took her life earlier this year. Because of my time with Ian, I was blessed to chat with her....Abbie Evans. The Butterfly Girl is a documentary about her..... go visit please. So tonight, my heart pounding and eyes blurry, and wondering what can I do now? I have nothing more to give or do. I have no more tricks for laughter and I am fresh out of people to call or email that can make it better. But maybe we have one, last gift. I need your help, with this gift, as it is not from me, it is from God. If you took the time to read this long post then please STOP NOW! Stay standing or sitting, eyes open or closed, hands together or at your side, aloud or silent and long or two small sentences..... but...... say a prayer for Ian, his family, and those he has touched. Ian will forever live in thousands of peoples memories but his family will forever miss him, question why, and maybe even be angry. Say a small prayer, please. Fighting For Ian....... go check my little buddy out.... SHARE his story and then go share someone elses story. Go LOVE Ian by loving someone else who is hurting....FIND a story, because behind every story is a heart that is hurting. A family being crushed or maybe just a single soul is searching for someone to love them. Thank you FB friends....... I really do appreciate so very many of you.... Nathan Please also visit and support Butterflys AndBandages, Butterflys And Bandages, The Butterfly Fund.
Posted on: Sun, 08 Jun 2014 02:07:00 +0000
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