Had you asked me even just one year ago if I ever thought my name would end up in The Enquirer linked with the word “miracle” I would of course said “certainly not”. In fact I am not a reader of this type of thing as I do not follow such matters in life as one would typically find in such a news paper. Thus upon receiving a phone call several weeks ago from one of my mom’s telling me that she had been contacted by a reporter claiming to be from the National Enquirer came as a bit of a shock to us both. Her daughter has been receiving a lot of press in recent months as her story has spread across the globe, but little Miss Rylea at the age of 6 is by no means a Hollywood star. She is however an example of one of life’s miracles but the real question should perhaps be what is the true miracle taking place here?
Several months ago her mother sent in a very simple question through our web site general’s general “contact us” section. At the time I do not think Dawn really expected any sort of reply but perhaps a standard “no”. Her question was so simple, honest and earnest. She only was wanting to know if I could help her 5 year old daughter who had been totally blind since birth to see. She has since told me that she has been asking that very same question of numerous medical professionals since the moment she found out her newborn baby girl was blind. No one had ever given her even a ray of hopeful light over the years but Dawn just kept asking as she is not one to accept fate as being predetermined. Then she stumbled upon me and I upon her. I understood her instantly as only a mother placed in a similar situation could. No medical professional, clinician or scientist could have known immediately what I knew about this mother and her child unless they also had been placed to walk in such shoes.
She sent her question off to a company in China, half way across the world only to have it sent back to a woman that lived only a day’s drive away. After several email and phone conversations with Dawn to determine exactly what her child’s status was I set about my work. My task was a simple one on its face; could the type of stem cells used by my company be used to treat an underdeveloped optic nerve. It did not take me long to figure out that it had never before been done, there were no studies, no research not even one single medical paper on the subject. All I found was a whole lot of nothing. That however did not stop my mind from turning over the possibilities.
All it meant for me was that I had to make all the connections in my own mind starting from a blank page. Nothing in my research gave any indication that Rylea’s situation of having been diagnosised with Optic Nerve Hypoplasia could be treated. Everything I read said that it could not be treated but knowing what I knew about stem cells told me that what I was reading was in fact so out of date with today’s technology that it was simply wrong. The more I thought about it the more absurd the notion of ONH being untreatable became. Following a path of logical progression in my naturally analytical mind I became convinced that in fact it could be done and who better to step forward and do it than I. Why not me? Who would do it if I did not? Would it ever be done if I did not? Should I just let this go on its predetermined pathway or should I step in and change this child’s fate? Who is that decides our fates anyway if not us? Perhaps in fact I was Rylea’s fate and she mine. Now her fate and life has been forever altered. She and I will be linked together in this time and place forever henceforth.
It is not so much that the restoration of Rylea’s vision is the miracle but rather it was the connection of her and I that was the miracle. For me to have come to this place in life I would not have guessed it would be so even just one year ago yet here I am. I was guided into Rylea’s life and she into mine that is the miracle not told by the Enquirer’s reporter. It is the story behind the many headlines that have taken both Rylea and I out of our space of privacy and thrust us into such places as the National Enquirer. I wonder what she will think 20 years from now about her moment of fame.
What I think about it all is that behind the headlines is a story that no one has told.
Several months ago her mother sent in a very simple question through our web site general’s general “contact us” section. At the time I do not think Dawn really expected any sort of reply but perhaps a standard “no”. Her question was so simple, honest and earnest. She only was wanting to know if I could help her 5 year old daughter who had been totally blind since birth to see. She has since told me that she has been asking that very same question of numerous medical professionals since the moment she found out her newborn baby girl was blind. No one had ever given her even a ray of hopeful light over the years but Dawn just kept asking as she is not one to accept fate as being predetermined. Then she stumbled upon me and I upon her. I understood her instantly as only a mother placed in a similar situation could. No medical professional, clinician or scientist could have known immediately what I knew about this mother and her child unless they also had been placed to walk in such shoes.
She sent her question off to a company in China, half way across the world only to have it sent back to a woman that lived only a day’s drive away. After several email and phone conversations with Dawn to determine exactly what her child’s status was I set about my work. My task was a simple one on its face; could the type of stem cells used by my company be used to treat an underdeveloped optic nerve. It did not take me long to figure out that it had never before been done, there were no studies, no research not even one single medical paper on the subject. All I found was a whole lot of nothing. That however did not stop my mind from turning over the possibilities.
All it meant for me was that I had to make all the connections in my own mind starting from a blank page. Nothing in my research gave any indication that Rylea’s situation of having been diagnosised with Optic Nerve Hypoplasia could be treated. Everything I read said that it could not be treated but knowing what I knew about stem cells told me that what I was reading was in fact so out of date with today’s technology that it was simply wrong. The more I thought about it the more absurd the notion of ONH being untreatable became. Following a path of logical progression in my naturally analytical mind I became convinced that in fact it could be done and who better to step forward and do it than I. Why not me? Who would do it if I did not? Would it ever be done if I did not? Should I just let this go on its predetermined pathway or should I step in and change this child’s fate? Who is that decides our fates anyway if not us? Perhaps in fact I was Rylea’s fate and she mine. Now her fate and life has been forever altered. She and I will be linked together in this time and place forever henceforth.
It is not so much that the restoration of Rylea’s vision is the miracle but rather it was the connection of her and I that was the miracle. For me to have come to this place in life I would not have guessed it would be so even just one year ago yet here I am. I was guided into Rylea’s life and she into mine that is the miracle not told by the Enquirer’s reporter. It is the story behind the many headlines that have taken both Rylea and I out of our space of privacy and thrust us into such places as the National Enquirer. I wonder what she will think 20 years from now about her moment of fame.
What I think about it all is that behind the headlines is a story that no one has told.
It is the story of why our paths crossed, how it was that I ended up in a place by which I could help this child and who it was that put me here. There is one tiny soul responsible for all of this and had it not been for his life and yes even his death Rylea would still be blind. It is not Rylea who is the miracle, it is not the doctors who worked with her that are the miracle, and it is not even me who brought it all together who is the miracle. The true miracle here is a life that existed before and the soul that continues on with such beauty and perfection that it can only be seen as angelic. It is this one that wove the movements of fate and time together with such a simple complexity that it becomes almost unseen. It is he who locked together the bits and pieces of our lost lives to create the whole of a true miracle. It is for whom I shall forever love. Such beauty, such perfection is he. Clearly the miracle is he my Justin Lee.
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