Page 12 - PFFW December 2018
P. 12

 A Family’s Heartfelt Thanks for the Gift of Help and Hope
12 December 2018 -
Dear Members of The Professional Firefighters of Wisconsin:
August 10, 2011, was the first time we ever heard the words Spinal Muscular Atrophy (SMA). This date forever changed our family. Those three letters shattered our world and gave us no hope for
our future. On that date there was no treatment or cure for SMA, only a death sentence, often delivered by doctors as a “take him home and love him, as he won’t see his second birthday” type of message. This was the message we were given to our then one-month-old first born, Mateo, who is now seven years and two months old!
The first year of Mateo’s life was full of tears, 911 calls and constant fear of losing him. By his second year we were more comfortable with our new life with SMA and began traveling and getting more involved in life. We eventually decided we wanted to add to our family and decided to risk the one in four chance we would have another SMA child.
On January 24, 2016, Javier entered the world and he would help change SMA. A clinical trial was recruiting with the drug Nusinersen. This drug would be delivered via lumbar puncture to replace the missing protein in SMN2. We took the chance of the unknown and Javier was enrolled in a trial at Johns Hopkins Hospital in Baltimore, receiving his first injection at 12 days old. Javier began
meeting milestones that SMA type 1 children could never do. On December 23, 2016, Nusinersen was FDA approved. Despite it being FDA approved Javier’s trial is still open for another two years. He continues to travel to Baltimore every four months for injections. Javier can walk, eat by mouth and requires minimum medical intervention. Mateo began receiving this drug in October 2017. He has begun to get movement back in his hands and feet and a small curl of his mouth is back to smiling!
With all the excitement we were seeing in our boys we decided our family was not complete and we again rolled the genetic dice and got pregnant with our 3rd SMA baby. Amelia entered the world on March 30, 2018. Amelia began treatment of SMA at 11 days old. She is developing on target for her age and at this time needs no medical intervention.
All our children are thriving due to research and advancements made in the last seven plus years. There is currently one FDA approved treatment available and many more in the pipeline. With continued research the hope is a SMA cure will be available soon!
Thank you for all you do for our family and the thousands of other MDA families fighting a muscle disease. We would never be where we are today without YOU!
With Thanks,
The Medina Family

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