Ivo is a bright and beautiful 7-year-old boy with a huge heart and a big smile. He is the result of a deep love between Victoria and her husband, and from the very beginning, they knew he was special…
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Submitted by Ashley’s mother, Megan:
Ashley was born after a normal pregnancy in July 2014. We started noticing nystagmus around 4 months and, after seeing an ophthalmologist, Ashley had a brain MRI at 6 months. The scan found spots, but we weren’t given a diagnosis.
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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.
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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.
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Tiara was born in February 2023 and, despite some concerns during my pregnancy about her size, she arrived via normal delivery. She was a beautiful baby and everything seemed fine.
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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.
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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.
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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…
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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.
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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..
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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.
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Masanori Tanaka shares the story of her son, Harutoshi:
Harutoshi was born in October 2005 in Japan. Shortly after his birth, We noticed that he had nystagmus, and after a few months and some genetic testing, he was diagnosed with PMD
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Gina shares the story of her sons, Garrett and Gavin:
Garrett, now 24, and Gavin, 20, were diagnosed with classic duplication PMD in 2001. Garrett was 3, and Gavin was not yet born.
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Maite Robinson shares the story of her daughter, Ana:
One of the first things parents learn about their special needs babies is that they possess incredible courage. Our Ana is no exception: she suffers from Pelizaeus-Merzbacher-Like Disease and still meets every day with a smile.
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Cierra Neff shares the story of her daughter, October Childress:
My pregnancy with October was uneventful up until the end. I was having a lot of pain and discomfort. I had to do stress tests daily and they decided to induce me a week early. The doctor thought October was underweight.
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Adriana Lourenço of Bauru in Spain shares the story of her son, Daniel:
My son, Daniel, is 14 years old. We received the diagnosis of Pelizaeus-Merzbacher just two years ago.
Sara Stuckey shares the story of her son, Mason:
Mason began displaying symptoms around 4 - 5 months old. He was initially diagnosed with cerebral palsy just before his second birthday. However, two months ago, we received the diagnosis of SPG2 from the neurologist although the genetic counselor believes it is PMD Null. Mason will be 4 years old in November.
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From Poland, Alicja Hałąs shares the story of her son, Olaf: Olaf was born on July 25, 2013, the youngest of four children. From the very beginning, we noticed that something was wrong - his eyes were moving from side to side - nystagmus - and he wasn’t reaching milestones like his peers.
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Alex and Igor were born in Brazil on November 26, 1984, and on May 23, 1989. At 14 years old, Igor presented his first symptoms and Alex at 18 years old.
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Leonardo Xavier Labrada was born on February 8, 2013. He is the youngest of three siblings. He has an older sister (Samantha) and an older brother (Carlitos). From the moment we laid eyes on him, we were in love.
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