J's Last Dance
Donazione protetta
Dear Friends and Family:
Like any other parent I will never forget "D-day" (diagnosis) for us. My precious 8-month-old had just spent 5 hours in an MRI scanner at Children's of Milwaukee searching for a possible tumor on her spine causing her progressive lack of movement. Instead there was not a tumor and I was told about a fatal disease called Spinal Muscular Atrophy, which was soon after confirmed by genetic blood testing. We were given a limited prognosis by the neurologist, but I refused to listen to that doctor tell me I was going to lose the best thing that ever happened to me. I immediately got on the internet and found other families like ours. My heart broke seeing all the photos of babies who lost their lives to this disease, but I also found many families whose children were living and HAPPY and I was put in touch with an amazing doctor near us in Madison. Dr. Schroth is a specialist in her disease and I can never thank her enough for all of these "extra" years we have had. Despite the fact that Jerika never crawled, walked, rode a bike or did many other things most children can she was a very happy girl. Creativity allowed for our own way of fun and we enjoyed many wonderful moments together and I couldn't begin to put words to the gift my girl has been to my life.
Unfortunately, SMA is a relentless disease that has left Jerika with very little movement and an incredible amount of pain that has become too much, and like any parent, I promised my child when it got to be too much I would be behind her no matter what. She has endured more in her 14 years of life than most adults will ever have to. I am beyond proud of her for fighting so hard for this long and I am honored to be her mother.
She has let me know now that she needs to be free of her broken body. She has a couple last wishes that I would love your help with. She wants a to have a "prom"..one night of music and dancing and fun. She wants a disco ball and black and lime green decor and to be surrounded by lots of friends she has been unable to see for a long time. She also wants to make it down to see her other SMA friends we see every year at Avery's Race the weekend of July 14th. After that she will come home and begin her journey to Heaven.
I will be forever humbled by your support through the years for us and I would be forever grateful for any help you could give me with the end of our journey together and many prayers of strength to make the coming days as pleasant and magical as possible!
Like any other parent I will never forget "D-day" (diagnosis) for us. My precious 8-month-old had just spent 5 hours in an MRI scanner at Children's of Milwaukee searching for a possible tumor on her spine causing her progressive lack of movement. Instead there was not a tumor and I was told about a fatal disease called Spinal Muscular Atrophy, which was soon after confirmed by genetic blood testing. We were given a limited prognosis by the neurologist, but I refused to listen to that doctor tell me I was going to lose the best thing that ever happened to me. I immediately got on the internet and found other families like ours. My heart broke seeing all the photos of babies who lost their lives to this disease, but I also found many families whose children were living and HAPPY and I was put in touch with an amazing doctor near us in Madison. Dr. Schroth is a specialist in her disease and I can never thank her enough for all of these "extra" years we have had. Despite the fact that Jerika never crawled, walked, rode a bike or did many other things most children can she was a very happy girl. Creativity allowed for our own way of fun and we enjoyed many wonderful moments together and I couldn't begin to put words to the gift my girl has been to my life.
Unfortunately, SMA is a relentless disease that has left Jerika with very little movement and an incredible amount of pain that has become too much, and like any parent, I promised my child when it got to be too much I would be behind her no matter what. She has endured more in her 14 years of life than most adults will ever have to. I am beyond proud of her for fighting so hard for this long and I am honored to be her mother.
She has let me know now that she needs to be free of her broken body. She has a couple last wishes that I would love your help with. She wants a to have a "prom"..one night of music and dancing and fun. She wants a disco ball and black and lime green decor and to be surrounded by lots of friends she has been unable to see for a long time. She also wants to make it down to see her other SMA friends we see every year at Avery's Race the weekend of July 14th. After that she will come home and begin her journey to Heaven.
I will be forever humbled by your support through the years for us and I would be forever grateful for any help you could give me with the end of our journey together and many prayers of strength to make the coming days as pleasant and magical as possible!
Organizzatore
Jen Bolen
Organizzatore
Appleton, WI