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Submitted by River’s dad. Storm:

River has gone through two very distinct journeys in his young life so far. First, after 36 hours of labor River was born with Hypoxic Ischemic Encephalopathy and a subgaleal hemorrhage. After a perfectly normal pregnancy, we were told on day one that it could be River’s last. 

Submitted by Glib’s mother, Larysa:

Glib was born in 2017. We began to have serious concerns for his health when, at 2.5 months, he had trouble holding his head up, was generally lethargic, was slow to gain weight, and developed stridor and nystagmus.

Hi, My name is Angi and I am mom to my son, Brant, now four years old, who is the center of my universe. He is fiercely loved by my husband and I, his older sisters, and everyone who is uniquely blessed to know him. He is a sufferer of Pelizaeus-Merzbacher Disease.

My name is Robert and I live in Franklin Square, New York with my family. My wife Kristen and I have four sons; Brian (27) Trevor (25), Andrew (22), and Dylan (20). All of them are currently living at home. 

My name is Jeff and my second child (Jack) was born 7 ½ pounds and 20 inches long in March 2000 through a full-term, normal pregnancy and delivery. The moment he was born Jack let out…

My name is Carlos Labrada and my son Leonardo Xavier was born on February 8, 2013 in San Diego CA.  Our youngest of three children.  From the moments we first laid eyes on him, we were in love.

James was born in September of 1989. At about four or five months of age, his childcare provider expressed concerns about his not moving around in an age appropriate way. We took him to the pediatrician, who said..

Hello, my name is Dave and this is my son Jaden. We live in Mexico, NY. Jaden is 21 years old and we received his diagnosis of Classic Pelizaeus-Merzbacher Disease when he was only 18 months old.