Elijah's Victory
Living with Neuronal Ceroid Lipofuscinosis
Type II (Late Infantile Batten Disease)
Type II (Late Infantile Batten Disease)
With a camera in my face I could not really put into words what Noah's run across America meant to my family and I. I needed some time to process all the emotion of it. In a world with so much selfishness, everyone out for themselves, and how to become richer and famous there is a man that inspired us to more than those ideas of success. A true hero Noah is to us. So many will never come into our son Elijah's room. Seeing him struggle in his hospital bed, coughing and seizing. In a very real way Noah has brought some of the world into that room. Letting them know that every life maters to God, every life has value and is worth saving. God has inspired us, given us hope, He has used Noah and the team of people who have come along side him to make a cure seem possible. What seemed impossible now seems more possible. Our son will likely not see that day, but we are comforted, we have hope that other children will have the chance to live. It takes selfless people like Noah to make these things happen. He has done more than just run across America for those who cannot run, God has used him to inspire us to live selfless lives. We thank him for being obedient to that call. When the doctor tells you your son has a terminal disease, no cure and no treatment, everything in your world turns upside down. You accept the reality that hope is not an option. Take him home and make him comfortable. It is very unlikely that a treatment or cure will be available for our son. But today we have hope that someday rare diseases will be wiped out. God bless you Please visit Noah's website at www.run4rare.org See a news clip about Noah with Elijah's dad being interviewed here
1 Comment
irrriki
9/30/2015 04:16:55 am
Hi.
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