Ashley

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Ashley

Located: United States

Symptoms: Anxiety, Attention deficit disorder, Intellectual disability, Obsessive compulsive disorder, Overgrowth

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Ashley was born in Miami, Florida, on August 11, 1983. Ashley was 9 lbs 3 oz and 22 inches long. Her apgar scores were 8 and 9, respectively. She was jaundiced so we had to stay in the hospital an extra day. As a result of the jaundice, Ashley went to Miami Children’s Hospital because her bilirubin was over 20. She spent 5 days in the children’s hospital. Ash was an easygoing baby. Some of her milestones were a bit delayed. She walked at 16 months. Basically, Ashley seemed fine, but when she turned three the pediatrician showed concern over the fact that Ashley did not talk. She spoke with one word or mimicked. I put her in a children’s preschool program 3 days a week so that she could be with other children. By the time Ashley was four, I spoke again to her new pediatrician and we decided to have Ashley tested as it seemed like any conversation with her went over her head. As it turned out, Ashley was delayed in language and motor skills and so it was stated that Ashley had a neurological impairment.

Ashley received years of speech, occupational, and physical therapy. Ashley’s doctors were very concerned about her height. Ashley had an MRI of her pituitary gland when she was 6. At this same age, her neurologist diagnosed Ashley with Sotos Syndrome. I was never convinced that Sotos Syndrome was the correct diagnosis. Ashley had many EEGs to see if she suffered from seizures. (Luckily, no seizures). So there was a lot of testing and therapy. Ashley spent all of her school years in special education and graduated at 21 with a special diploma. Since graduating from high school, Ashley has had a supported job. Ashley had problems with attention span when she was small and she still has difficulty with it. Ashley’s health was good except for the first few years with many colds and ear infections. Ashley picks at her skin a lot, paces a great deal, and has anxiety. Ashley has been on many medications for the anxiety and picking.

Ashley did not develop any major medical conditions until she turned 34 when she went into heart failure.  After this, we had genetic testing done to finally be sure that Ashley was diagnosed correctly. Ashley was finally diagnosed in 2018 with Tatton Brown Rahman Syndrome. Ashley is working very hard on becoming independent. She lives in her own home (which is a few doors down from me) with much guidance and support. Ashley continues to grow each and every day. Her hobbies include television, reading, art work, needlework, singing, riding horses (when she is not on a blood thinner), and telling stories. She also loves children and has a great sense of humor.

Written by Ashley’s Mom.