By Lisa Butler
(February 1, 2018) Imagine the shock and helplessness of seeing your child’s body suddenly growing weak, clumsy, and unable to walk, or even stand; the fear that they may never live a normal life, or even survive this terrifying, disabling disorder. Imagine being greeted with the puzzlement of healthcare professionals, a battery of tests, misdiagnosis, needles, uncertainty and inconclusions – all the while the condition worsening before your eyes, and this person, this child, slipping right through your fingers. How will this all end? I truly hope for you, for the sake of your family, community and loved ones, that this feeling, this picture I have painted, stays only in your imagination. And that you never spiral down to the level of desperation brought on by a very rare and disabling condition, like I did.
On January 28th, 2001, my son was diagnosed with Guillain Barre Syndrome after ten days of rapid physical decline and mobility. He was admitted to ICU, diagnosed and was treated with Immune Globulin, a plasma product. My entire family was given a gift; the life-saving gift of plasma donation. And although he left the hospital strapped to a wheel chair, lacking the strength to even sit upright, he began a recovery that would progress and regress with a second stay in ICU and a second round of immune globulin. Source plasma is used to manufacture life-saving bio-medications for people living with rare, serious, and chronic diseases and will allow those individuals to live normal, healthy lives. In fact, Source plasma donors have safely donated – at a conservative estimate – more than 500 million times over the past few decades, saving countless lives. Thanks to these dedicated plasma donors, our son did recover, he is now part of the 5% of patients in the rare disease community of 7,000 that has a therapy.
When I read the article “What is the Blood of a Poor Person Worth?”, on February 1, published in The New York Times, I was struck by reference to the plasma donors, as “desperate people”, and the lack of information regarding how these people actually have given a much better quality of life back to so many. To me, there is no price too high for the value of my son’s life, his well-being, his chance to go on, and to go far. And although, the debate continues, how much to pay? Why, to whom and how often? … I feel the article lacked balance in its portrayal of Source plasma donors, who come from all walks of life, cultures, places and stories. These people are heroes to many, and should know that their choices have made a monumental difference in the lives of others. As the mother of child stricken with GBS, and the Executive Director of the GBS|CIDP Foundation International, an organization whose 44,000 members depend on the Foundation to fight for access to these life-saving treatments, I offer an infinite thank you to all donors, from all corners of the world.