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MWS Stories

United States > Cassie and Jacob

© Mowat-Wilson Syndrome Foundation

© Mowat-Wilson Syndrome Foundation
© Mowat-Wilson Syndrome Foundation © Mowat-Wilson Syndrome Foundation

I live in Fitchburg Massachusetts, I actually have three children my daughter Cassandra, 14 yrs old, my son Joshua, 11 yrs old, and my youngest boy Jacob, 6 yrs old. Yes my two have very different degrees of the syndrome. Cassie went undiagnosed for years and was very ill throughout most of her young childhood. Cassie is moderately mentally retarded cognitively functions are scattered in the 3 to 5 yrs old range., she has partial agenesis of the corpus collosum, a seizure disorder, (but has been med. free now for 2 yrs.), many behavioural issues, visual deficits,( which required surgeries), hypotonia, Hirschsprungs disease, chronic constipation, stenosis of the rectum and a displaced anus, (her vaginal and anal wall are one in the same), as a result she will have her ostomy for life, gastric motility, osteopenia, and most recently has been found to have a kidney malformation. On top of all this Cassie was also born with bi-lateral skew feet, (a form of club feet), requiring many surgeries to correct, and also bi-lateral “trigger” fingers, also requiring surgery to correct. Through all this Cassie has never stopped smiling and has a wonderful sense of humor. With Joshua’s birth he is as healthy and typical as can be he was always ahead of all his milestones, and is considered gifted functioning a 1-2 years above his grade level. He is very active, and loves his siblings tremendously. Jacob was born appearing to have no issues, and then just did not start to reach his milestones at 12 months I had him evaluated and his facial features really began to become more noticeable to take after his sister, then medical “stuff” started. He really had no health issues other than asthma as an infant/toddler around 3 yrs ago he just began to have one issue after the other for the longest time they thought he was autistic in nature but was to social and kept good eye contact to be fully diagnosed. He has since been found to be developmentally delayed cognitively functioning 2 yrs lower than his peers, he has a seizure disorder, sensory integration dysfunction, hypotonia, dystonia, severe asthma and allergies, GERD, intestinal motility, and chronic constipation. Jacob too, is always smiling and happy and also a very funny sense of humor.

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