SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

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

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

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Caregiver Resources
Caregiver Stories
Juvenile Scleroderma
Juvenile Scleroderma Stories
Morphea Scleroderma
Morphea Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums *Online Support Group!*
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?

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!

Go to Lyn: Systemic Sclerosis

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)