Almost 20 years...waiting for science
What a way to begin the year! Today was a miracle for my son Jonathan. He has been waiting almost 20 years for today.....for science to come along and help him battle his disease, A-Typical Hemolytic Uremic Syndrome. This disease is ruthles...s, and does not discriminate. This disease has made our family live in fear, daily. Today, Jonathan received his first dose of this science that he has been waiting for...Soliris. This medication will put out the fire that aHUS starts, and this medication will enable Jonathan to receive the gift of life; a transplant. He did so well. No reaction. No need for pre-meds. 35 minutes of peace, replacing 20 years of fear. Don't get me wrong......I STILL have fear, but now, hopefully, it will not be at the hands of this disease. Thank you to all that have given Jonathan support through this and to those that have encouraged him, prayed for him, and prayed for Leo and I. Thank you to those that have listen to me cry, scream, and break down because sometimes, just sometimes, behind the smile my heart aches. We will forever be grateful. ♥ This is just the beginning! ♥Views: 72
Comments are closed for this blog post
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Comment by Kamal D Shah on January 10, 2013 at 12:38am -
Hi Donna, this is Kamal (we met at FB recently as well!). Hope Jonathan is healthy and cheerful with this new treatment. All the very best!
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Comment by Linda Burke on January 5, 2013 at 12:24am
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The first page in a new sequel of hope and opportunity - may this next chapter open up all the glories for which Jonathan has so patiently waited. Peace to you and Leo as this unfolds - you'll be in our family's thoughts and prayers.
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The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
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