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Lulu M: Grandson with Morphea Scleroderma

He is my brave little soldier.

Sailboat by Shelley EnszMy grandson, Max, was diagnosed with morphea over a year ago. A strange patch appeared on his shoulder blade which grew bigger over time. He also had a small bald patch on his head, which we thought was caused by problems he had at birth when he had a diaphramatic hernia and was given a 50/50 chance of survival. He was operated on a day after birth to get all his internal organs back in their rightful place. It was very touch and go and he was in intensive care for three months. Twice we were told he would not live through the night. A second operation took place shortly after the first. He was on oxygen therapy for two years with antibiotics to ward off infections which caused his saturation levels to lower dramatically.

Now, thankfully, he seems healthy most of the time although he tires more quickly than most children as his lungs are not 100% because of damage caused while in the womb where his organs got crushed and grew in his chest.

He survived all this, only to get diagnosed with morphea scleroderma. He is on methotrexate and scarring seems to be less active, and has not gotten any bigger.

We had never heard of this disease, and we just hope doctors will be kind and help him and us through this second difficult journey. He is eight years old now, and injections seem a normal way of life for him. He is my brave little soldier.

To Contact the Author

Lulu
Email: [email protected]
Story edited 06-16-09 JTD
Story posted 06-16-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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