Addie Moser is a bright, creative and courageous 11-year-old girl who has suffered for more than a year from Gorham’s disease. Gorham’s disease is a very rare skeletal condition that can be life threatening. It is characterized by loss of bone and fluids, because of which it is commonly known as vanishing bone disease.
The disease has taken Addie’s left collar bone and scapular and now is causing excessive buildup of fluid around her lungs. Since October 9, she has been hospitalized in three separate hospitals with many teams of doctors working tirelessly to help her. The disease is somewhat of a mystery and the procedures are somewhat exploratory and experimental.
Addie’s suffering began when she was two when her mother died of cancer at the age of 38, after a long courageous battle, leaving five children under the age of 15. Her father cared for his children to the best of his ability but life took its toll on him and he was no longer able to provide for them. The children were often separated and cared for by friends and family. After too many moves back and forth, the Moser children now have a home where they are united.
My friends, Ryan and Michal (pronounced Muhkyle) Farley from Missoula, Montana, opened their home and their hearts and lovingly took guardianship of Addie and her four siblings to raise them with their own three children.
Addie is currently at the Children’s Hospital of Philadelphia where Ryan has been since after Thanksgiving and through Christmas and where Michal now will stay. Addie is undergoing her fourth surgical procedure, each one an attempt to “glue” the holes where fluid fills her lungs. She is constantly attached to a pump that drains the fluids from her body. She is in need of many prayers, hope and a miraculous healing.
You may have never heard of Mattie Stepanek, the young poet, philosopher and peacemaker, but I believe he can intercede on Addie’s behalf. Mattie, like Addie, was also the youngest of his family and, like Addie, was adventurous and liked to play. He died at almost 14 from a rare and fatal neuromuscular disease called Dysautonomic Mitochondrial Myopathy.
Oprah Winfrey called Mattie an “angel on earth” during her statement at his funeral. Former U.S. President Jimmy Carter delivered the eulogy, saying, “We have known kings and queens, and we’ve known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek.”
Mattie understood that “we know and need hope most, not when things are going well, but when we are facing a challenge – a life storm. Embracing an attitude of hope is not always easy,” Mattie said, “but it is always worthy.”
For nearly fourteen years, Mattie challenged everyone he met to appreciate the wonders of life and pointed them to Heaven, God, and His Church. Through his brave physical and spiritual struggle, Mattie taught the world that no matter how desperate or dark life might seem, hope is always within reach.
Mattie’s supporters believe that the world desperately needs a spiritual advocate for the disabled and for children facing difficult health or family situations. They think that Mattie may just be that advocate and they have introduced the cause for his canonization as a saint. A miracle is needed to continue the cause.
urge everyone to pray the prayer below for the favor for Addie to embrace an attitude of hope during her “life storm” and for the miraculous healing of Addie through the intercession of Mattie.
Heavenly Father, Creator of all and deliverer of peace in every soul, You alone grant every grace and blessing we seek through your Son, Jesus Christ, our loving Prince of Peace.
Confidently, I ask You, Lord, to grant the favor I now ask, for Addie Moser to embrace an attitude of hope during her “life storm” and for the miraculous healing of Addie Moser through the intercession of Mattie Stepanek. In accordance with Your will, and through the prayerful intercession of your servant, Mattie Stepanek, may it be done, and may it bring glory to Your name through Mattie who, in his life, was Your courageous missionary of peace, hope and joy.
I make this prayer in faith and thanksgiving, through Jesus Christ, Our Lord. Amen.
Michal recently emailed me from the Children’s Hospital:
Hi Dan, Happy New Year,
– after a quick Christmas, I will be honest, it did not feel much like Christmas this year. We have a team of doctors that are studying and treating Gorham’s patients. Everyone is trying to make sure we are doing what we need and can do to heal Addie. Addie has been pretty quiet since I have been here. She is not interested in talking on the phone or Facetiming. She is struggling with pain and frustration. I continue to pray and hope for some sort of relief and sign that things are beginning to work, and hope we see relief and progress soon.
Thank you for praying for Addie! Oh what a blessing that would be – the hope and miraculous healing. But, even if Addie was able to embrace hope and peace within this “life storm”, that alone would bring me contentment.She went in today for her fourth “procedure.” However, we have not had any decrease in fluid output yet. The Doctors are puzzled, but say they will not give up. If there is no decrease in output today after this procedure, they may try one more procedure before we start talking about Addie undergoing a pleurodesis [a surgical procedure used to treat the buildup of excessive fluid in the lungs].
Addie is such an amazing little sweetheart that has so much to offer this world. I will read your article with her and I will also read with her about Mattie.
Today, I was reading to her a book that Maggie [my daughter] suggested, “The Traveller’s Gift.” Addie was having an awful morning. She would not speak or look at anyone. I just started reading – and interestingly enough the main character in the book was “visiting” Anne Frank and the “lesson” he was sent to learn was to choose happiness.
Addie did not say a word during the whole chapter. As soon as I finished the chapter, the nurses came in to change Addie’s dressings on her pic line, something she very much dislikes. Ryan and I left the room because she does better when we are not there. When we returned she was painting a picture and conversing with the art therapist (highly unusual for Addie to do on a day when she has decided not to talk with anyone).
Sometimes, when I read to Addie or talk to Addie about choosing happiness, choosing to pray, to think about faith even if we are not sure we believe, I feel like she is not listening or does not want to hear my thoughts. But, today I felt differently – I think she was glad to hear about Anne Frank – and that Addie did decide to choose to have a different attitude. I think she will be excited to hear about what you are doing, and that she will also be interested in Mattie’s story.
You may read more about Mattie here.
You may also financially help Addie by contributing here.