Mason's story battling Juvenile Myositis through 2009.
http://www.youtube.com/watch?v=rc5GqyoPGGk&feature=related

2009 was a turning year for Mason with the help of the Cure JM foundation and a community dedicated to helping Mason battle this disease.
http://animoto.com/play/gsGGn9Ob7pdyDwQdGJ7PsA
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Mason was diagnosed with Juvenile Dermatomyositis at the age of 17 months. Our initial thoughts were that he would be on the steroids for about 2 years and then hopefully go into remission. Quickly, Mason proved that he would be a more difficult case. We would get the disease under control for a bit, then he would relapse and we would have to increase the prednisone dose. Early on he showed signs of skin breakdown that would occur because of a simple bump. Mason was then put on Methotrexate chemotherapy along with the prednisone. After being on an oral dose we switched to an injectable dose, but that still didn’t work. He was taken off of methotrexate and Cellcept was started. For a while Mason did really well, got really strong, and looked fabulous! It was short-lived and he was once again on a higher dose of prednisone and more Cellcept. Later on, IVIG was tried, IV solumedrol…it would work temporarily and then we would be back again for more doses.

As time passed, Mason endured more and more difficult times and had to fight for his life. In the summer of 2007 he suffered a perforated bowel due to the progression of the disease and the heavy steroid use. He had a large portion of his colon removed and an ileostomy placed to allow the colon to heal. While he was healing from surgery the doctors noted a heart murmur. Tests were done and they discovered he had an enlarged heart. He also had high blood pressure because of the steroid use. He was put on several medications to hopefully decrease the size of his heart and lower his blood pressure. He was in the hospital for 4 weeks during that ordeal. During that time we tried Rituximab treatment to help him get stronger. It seemed to give him a little boost, but nothing significant. Two weeks after being released from the hospital we rushed Mason to the hospital in respiratory distress. Because Mason’s immune system was so depressed because of the high doses of prednisone and the Rituximab treatment on top of that, Mason got pneumocistis pneumonia. A day after being admitted to the PICU, Mason was intubated and put into an induced coma. He fought hard for 5 weeks in the PICU and was finally sent home with oxygen and a Bi-Pap machine. He was on oxygen for 8 months and now has scarred lungs due to the pneumonia.

Mason had surgery to repair his ileostomy in April of 2008. That left more freedom for him to fulfill his wish to go shark fishing! Mason had the amazing opportunity to receive a wish from the Make A Wish foundation. He was fortunate enough to get his wish and go shark fishing in the Florida Keys. Unfortunately, just before our trip, Mason’s eyes developed cataracts so quickly and so severe (due to prednisone use) that he was not able to see. He had fun shark fishing but was not able to see anything but shadows. Since then he has had surgery to remove the cataracts and is back to seeing again.

Mason has continued to get weaker and is now in a wheelchair. He had lost the use of all limbs. He has sheets of calcium covering every inch of his body which have caused enormous, painful sores where the calcium tries to exit the skin. He has had numerous surgeries to clean out infected pockets under his skin. He heals slowly and endures chronic pain because of his sores and inflamed muscles. We are slowly decreasing the prednisone to eventually discontinue it due to the fact that it is doing great harm rather than helping him. 

Mason was hospitalized in San Diego on a trip that was aimed at raising money for Cure JM.  He has made an amazing come back and is getting stronger each day.  He has regained strength in his arms, legs and torso.  He is again able to drive his wheel chair, sit in a chair and is working with physical therapy to put pressure on his legs in hopes that he will regain enough strength to stand and walk again.

Mason was a strong and loving little boy. He endured more suffering than many of us will in our lifetime yet he remained funny, witty, and positive. He had a strong presence and an optimistic attitude. We learned so much from him and he reminded us often to appreciate what is really important in life.  Mason passed away June 19 2012.  We pray that one day there will be a cure for Juvenile Dermatomyositis and no child will have to suffer its ill effects and that Mason did.



Story above from the Cure JM Web Site. Read about other Cure JM Hero's by clicking HERE.