Microsoft word - 2013 aw web bio madeline dean fort wayne in.docx

Arthritis Walk Youth Honoree Madeline Dean Fort Wayne, Indiana Madeline is a loving and bright 4 year old girl. She loves doing crafts, playing store, playing with her dolls and stuffed animals. On the outside she looks like a healthy child, however, on the inside Madeline’s body is constantly being challenged. At the age of 3 she was diagnosed with the rare autoimmune disease Juvenile Dermatomyositis (JDM). Madeline had been showing signs of muscle weakness and fatigue, along with swollen cuticles, a rash on her face and purple eyelids. Her family felt fortunate that Madeline’s pediatrician had heard of JDM because many children go undiagnosed for months. Blood tests confirmed her diagnosis. The immune system is comprised of a group of cells that normally protects our body from infection and other environmental factors. In Madeline’s case, her cells get active and they cannot stop. Her immune system ends up attacking previously healthy tissues, and harms the body instead of protecting it. In JDM, the immune system mistakenly targets muscles, skin and other tissues. Inflammation is the process that occurs when the immune systems attacks healthy tissue. In JDM sufferers, the inflammation primarily occurs in the blood vessels that lie under the skin and in the muscles. This inflammation causes weak muscles, and in the case of JDM - skin rashes. If blood vessels or muscle cells in other parts of the body are inflamed, other systems of the body can be affected, such as the digestive tract, heart and lungs. If you spend a day with Maddie, you would see her energy level is not the same as that of a healthy 4 year old. She gets tired faster, and has short bursts of energy. Her mom said, “When Maddie was diagnosed it was hard to take in all of the information, especially since there is no set treatment plan and no cure; only the hope of sending it into remission with the possibility of it flaring at any time.” Madeline’s life has changed, and she is no longer allowed to be out in the sun; or if she is outside it has to be in the shade and she must remain covered. The sun causes her JDM to flare, so her clothing and hats are SPF 30; and she sometimes will wear SPF 50 sleeves and sunscreen. Today, with Madeline being on Methotrexate she is no longer allowed to be around large crowds because her immune system is being suppressed. Her treatment for JDM started with 3 days of inpatient IV steroids; and now consists of daily oral steroids, Prevacid, blood pressure medication, folic acid, Miralax, multi-vitamins and weekly Methotrexate injections. Madeline gets blood work once a month and visits her rheumatologist, Dr. Ballinger at Riley Hospital for Children. She will soon begin physical therapy. Madeline’s mom said, “This disease has brought its challenges, but it’s through these challenges that we have developed a stronger faith in God, come together as a family and have met new friends.” When Madeline was asked if she was afraid she responded by saying, “No, God is with me!” A favorite scripture of the Dean family is Isaiah 40:31 – But those who hope in the Lord will renew their strength, they will soar on wings like eagles, they will run and not grow weary, they will walk and not grow faint. Madeline exhibits the bravery and courage that make us proud to have her as a Youth Honoree for the 2013 Arthritis Walk. About the Arthritis Foundation The Arthritis Foundation (www.arthritis.org) is committed to raising awareness and reducing the unacceptable impact of arthritis, which strikes one in every five adults and 300,000 children, and is the nation’s leading cause of disability. To conquer this painful, debilitating disease, we support education, research, advocacy and other vital programs and services

Source: http://www.arthritis.org/files/offices/gc/Heartland/Walks/2013AWFtWayneMaddieD.pdf