With respect to the NOTE I wrote about Charlie and his Film concerning ALS, I included the following passage.
‘… here is an admission of sorts. Each and every week I’m sent news of extraordinary people. Souls for my camera. Mostly from you the viewers. And each and every week I’m faced with the same dilemma. How do I fund the making of such films.’
Here was one such message I received within a few hours of posting Charlie’s haunting photograph.
Good Morning Nic,
I doubt you will ever be able to meet this person. Her days are numbered and she lives far, far away from you.
The photo below triggered me into writing this note. While I feel deeply for that man I feel more deeply for the young woman of whom I write.
Her name is Robin. She has a rare disease, they call them orphan diseases because so few are struck by it that there is no money spent on looking for cures or effective treatments other than those funded individually. It is called multichromaticluckodystrophy, I am not even sure that is how it is spelled so I generally refer to it as MLD. It is genetic and similar to ALS and MS and other neurological diseases that effect the nervous system and muscles throughout the body.
Robin was diagnosed at 15 years of age. She was told she had 2 years to live. A straight A student. Bright as well as beautiful. The news struck her like a 2 ton truck and she did not want to live. Her mother and 2 brothers talked her into fighting the fight despite the odds she would face.
Her decision to end her life turned into a decision to live what life she had left to live and to live it to its fullest.
She continued her education and, although it was a struggle, she graduated from high school when she was 21 years old. Obviously she outlived the doctors prognosis….She attended college, while she could keep up with the work.
As the disease progressed she lost the ability to walk, to write, to feed herself, to talk and now she struggles to swallow. She lost friends as they moved into their busy lives. She did not loose hope or the support of her mother and 2 brothers all of whom have dedicated their lives to caring for her despite the cost to them in their time and money. Of money there isn’t usually enough to cover the basics so not only does her mother struggle to keep her daughter alive, she also struggles to keep a roof over their head and food in the refrigerator. Nobody complains. They do what needs to be done.
This young woman, so close to death, has lost so much yet she lives on and she does not complain. She takes pride in looking her best each day as she ventures forth into the world. Bright colors and jewelry she once was able to make. Her beauty still shines into the world through her bright blue eyes.
Robin is 26 years old now. Old yes, in what she has had to endure. Young at heart and resilient beyond description. Never a complaint. Always a smile and an infectious laugh at one of her brothers silly jokes.
She is a remarkable young woman. An inspiration. A pity that someone so young has had to endure all she has had to endure in her short lifetime.
Sorry you won’t get to meet her. I think you would have liked her. I know she would have liked you…she is that kind of person.
There are so many remarkable people ‘out’ there. You do a terrific job capturing the few that you do and presenting them to people who may never run across such people. Keep on doing what you are doing. It is needed. You have a gift.
A Soul Biographies Viewer