Storm Wood

When Storm was 22 months old his parents, Doug and Mary Jo noticed that he kept stumbling and falling more than usual. This prompted a visit to the doctor and followed an early diagnosis of Duchenne Muscular Dystrophy. This is a progressive disease, which has no cure and is characterized by wasting away and weakness of the skeletal muscles,

which control body movement. Now the focus was on doing everything possible to help Storm live with the disease and have a good quality of life.

Storm and his family travel to Columbus, Ohio for treatment every three months. The cost of this travel can become a burden. Children's Miracle Network is one of the only charities able to help theme with travel expenses to and from Ohio. Today, 19-year-old Storm continues undergoes treatments under this study, along with physical therapy. When he's not in treatment, Storm likes anything having to do with music. Storm was in his school's chorus and loves to help out his dad with musical sound productions. Storm debuted his musical talents during a CMN Radiothon by singing the popular Bette Midler song titled "From A Distance." His rendition inspired many to donate and help other children in need.

Watertown Child Represents
New York State
as National Ambassador
for Children's Miracle Network

Watertown, New York – The word champion evokes images of a victory on the field, in the ring, or on the track, but for some amazing children it takes on a whole new meaning. They are victors in the battle for life itself.

Madison Draper, who was born with severe congenital scoliosis at Samaritan Medical Center, joined child ambassadors from every state as part of the 2008 Children’s Miracle Network Champions Across America presented by CO-OP Financial Services. The program honors remarkable children like Madison, who have triumphed despite severe medical challenges. Celebrities like Tracy Byrd and Miss America 2008 Kristen Haglund accompanied Madison and other state representatives to Walt Disney World in Orlando, Fla., where they met with CMN sponsors, hospital and media partners who all convened to celebrate a year of medical miracles. Madi will also traveled with them to Washington, DC and met with the respective state representatives, Senators and even the President!

Madison has waged her own amazing battle over the past ten years of her life. Madi’s illness is severe congenital scoliosis resulting from Conradi-Hunnermann syndrome. “Conradi” is extremely rare and its source is unknown. The genetic syndrome caused severe ichthyosis in utero and the lack of fluid in the amniotic sac, which resulted in the severe scoliosis. Madi’s curvature actually spirals. The severe curvature means that her lungs are at risk without proper room to develop. Madi has undergone 30 major surgeries in her short lifetime.

Madi was the youngest child in medical history to undergo extensive spinal fusion when she was twelve months old. Madi is patient Number 98 in the Titanium Rib Project, which originated in San Antonio, Texas. She will continue to have her titanium ribs (she has them on both sides) expanded and replaced until she reaches puberty and undergo a complete spinal fusion. CMN of Northern New York at Samaritan Medical Center helped Madi’s family with thousands of dollars in travel expenses incurred during her treatment at hospitals throughout the country. She has also been treated at Samaritan Medical Center for infectious diseases and severe bronchial infections due to her compromised lung condition.

In spite of her illness, Madi was dancing before she could walk. She didn't walk until after age 2, but at 18 months her mom held her up so she could stand on stage for her debut performance in "Dancing On Sesame Street". Madi has won numerous photogenic and dance contests. Besides dance, Madi also takes voice lessons and can really belt it out which is surprising considering her low lung capacity. Madi loves music. She has studied piano and just beginning trumpet lessons, which sometimes requires her family wear earplugs!

Samaritan Medical Center has been a proud affiliate of Children’s Miracle Network since 1990. The hospital’s efforts on behalf of thousands of children throughout Northern New York has increased the availability of high quality healthcare and improved the chances for happier and healthier futures for children. For additional information please visit us at www.samaritanhealth.com.

Children’s Miracle Network – the alliance of premier hospitals for children – is a non-profit organization dedicated to saving and improving the lives of children by raising funds for children’s hospitals across North America. Each year the 170 Children’s Miracle Network hospitals provide the finest medical care, life-saving research and preventative education to help millions of kids overcome diseases and injuries of every kind. To learn more, go to www.cmn.org.