Sometimes I come across a story about a story about a sick child that breaks my heart. It’s even tougher when the child is someone I know or know his or her parents. Here’s the story of Dylan who was diagnosed with MECP2 Duplication Syndrome.
MECP2 Duplicaton Syndrome is a condition that’s characterized by “moderate to severe intellectual disability. Most people with this condition also have weak muscle tone in infancy, feeding difficulties, poor or absent speech, seizures that may not improve with treatment, or muscle stiffness (spasticity). Individuals with MECP2 duplication syndrome have delayed development of motor skills such as sitting and walking. Approximately one third of people with this condition cannot walk without assistance. Many individuals with MECP2 duplication syndrome have recurrent respiratory tract infections. These respiratory infections are a major cause of death in affected individuals, with almost half succumbing by age 25. Source
Here’s Dylan’s story:
Dylan’s birth was the happiest day of our lives.
He brought so many blessings into our lives and showed us the true meaning of love. When Dylan was born he struggled with constant upper respiratory infections which required many doctors and hospital’s visits. After an intense process of testing, my sweet boy was diagnosed with MECP2 Duplication Syndrome. Because of his disorder, Dylan has kidney reflux on his right kidney and if by age 3 his kidney reflux does not improve he will need a kidney transplant.
He has had many respiratory infections, febrile seizures and suffers from asthma and allergies. He also has progressive spasticity and severe developmental delays.
Dylan is such a smart, happy, sweet boy who loves movies and books and enjoys music. Dylan deserves to WALK and have a VOICE to communicate his needs and wants, deserves to live a LONG and HEALTHY life! This experiment will prove that a cure for this syndrome is possible.
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