I am honored to be able to share an inspiring story about a
personal friend of mine that was diagnosed with a blood disorder entitled Paroxysmal
Nocturnal Hemoglobinuria (PNH) exactly one year ago. He was told that this was an acquired disease
and the origin of disease in still unknown and there was no way to cure him! He was then told the only chance of a
comfortable life or possible cure was a Stem Cell Transplant, and up until this
date, there are no possible matches for him…. This time last May he was barely
walking, it hurt him to breathe, and/or talk. He lost blood at an alarming
rate. His weight dropped to 145 lbs. and he was given the alarming statistics
of life expectancy of three years after diagnosis. He spent weeks on end being admitted in and
out of the hospital, He also developed a near fatal blood clot in the vein
leading to his liver....needless to say he has been through one heck of a year!
He was approached by
the doctors to try a drug that would work to keep him alive! He was asked to participate in the research
of finding a way to battle this horrible disease. He is now taking the WORLD’S MOST EXPENSIVE
DRUG!!! The title of this drug is
Eculizumab(Soliris) and it costs a whopping $41,279 every 14 days....this
amounts to over $82k a month to keep him alive! He will have to take this drug
for the rest of his life or until he finds a match for the Stem Cell Transplant. Please if you can, go to www.marrow.org Register
to save a life, possibly my good friend! This story is beneficial to both children and families because my friend is still here today weighing in at 191 lbs, and instead of taking 22 pills a day, he now only takes four! He is still here with his children and he has a baby on the way! He told me that he will die with this disease, not FROM it!
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Theresa, I am always touched by people who can remain so positive when faced with such difficulties that would bring the bravest of people to their knees. I feel for your friend and hope that he can find a match soon. Science when used responsibly can be such a wonderful tool. Your friend will be in my prayers.
ReplyDeleteTheresa, It is amazing. When doctors are active in staying current with research the results save lives. My dad has a rare disease that most people die from before doctors figure out what is wrong. When he was admitted to the hospital the doctor had just returned from a conference where he had learned about the disease. Now 25 years later my dad is still doing well.
ReplyDeleteDo you think that early childhood practitioners would view themselves as professionals if they saved lives? But importantly we unlock potential for each child to have a great foundation.