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Located: United States
ADHD, Connective tissue disorder, Dermatofibrosarcoma protuberans, Dilated aortic root, Exostosis (bone spur), Gastroesophageal reflux disease (GERD), Hydroureter, Hypertension, Mitral valve prolapse and regurgitation, Nearsightedness and astigmatism, Overgrowth, Panic disorder, Supraventricular tachycardia

Joshua was born six weeks early on November 6, 1984. He was 6 lbs 12.5 oz and 20.5” long with a head circumference of 34.5 cm. He had normal APGAR scores at birth. Doctors felt my due date must have been wrong because he was so big until after 24 hours old he became very jaundiced and he was not able to keep his body temperature up on his own. He spent five days in NICU and during that time I just knew something was not right.

Joshua was our second son. James, our first, is 15 months older. Joshua is now coming up on his 36th birthday and is 6’5” and 265 lbs with a size 17 shoe. He also has a younger brother, Patrick, and younger sister, Kaitlyn.

Joshua was a beautiful baby! He slept a lot and nursed very often. After six months, he started becoming colicky. He had a very strong startle reflex and could not even tolerate the wind blowing on his body. He met most of his early development milestones, always on the latest end of normal. He walked at 18 months. He has only had one febrile seizure, at two years old.

Between the ages of two and five he started developing many ear infections and had to have tubes put in the ears, undergo an adenoid/tonsillectomy, and have his uvula trimmed. We began to notice oral motor delays: muffled speech, drooling, and a lack of pronunciation. (Currently, he speaks very fast, and we often have to slow him down and have him repeat himself for us to understand.) At this age Josh never qualified for any type of therapy, but by age 5 we were able to get him into sensory integration programs at our local university through our perseverance. It was awesome! The program helped give us a better understanding of Joshua’s strengths and weaknesses. Joshua gained a better sense of self awareness and improved his fine and gross motor skills. By the end of the program he was able to take the training wheels off his bicycle!

Throughout preschool we began to notice his developmental and social delays. After kindergarten it was evident that Josh needed extra help in the classroom, however, because of his lack of diagnosis we

were referred to a neurologist, who diagnosed him with “minimal cerebral dysfunction.” This diagnosis helped get him in special education programs, speech therapy, and occupational therapy.

As an adolescent Josh was very thin and tall, and he hit 6’ by 12 years old. He developed kyphosis and wore a back brace for a few years. At age 16 he was diagnosed with mitral valve prolapse and regurgitation and we chose to undergo mitral valve replacement surgery at that time. Since then he has undergone or been diagnosed with connective tissue disorder, craces, eye glasses for nearsightedness and astigmatism, night terrors, varicocele repair, inguinal hernia surgery, dermatofibrosarcoma protuberans removal, two pre-cancerous mole removals, exostosis (bone spur), hypertension, panic Disorder, gastroesophageal reflux disease GERD, hydroureter, ADHD, dilated aortic root, supraventricular tachycardia, infective (bacterial) endocarditis, second heart surgery with tissue mitral valve, and three separate electrophysiology studies with catheter ablations.

Despite everything that Josh has undergone throughout his 35 years, he is known as our “gentle giant” with a perpetual smile on his face. Joshua is a very busy guy and loves his routine. During the week he attends an adult day program, and he is active in dancing, bowling, and exercise classes and enjoys seeing movies on the weekend with friends. Joshua is a very loving, caring, intuitive, outgoing, helpful, and happy guy. When he gets in trouble he is very eager to please afterward and worries. Despite his large stature Joshua frightens very easily and is a bit clumsy.

One thing we have learned through these various health issues is that he has an extremely high pain tolerance, and oftentimes he says he is in 10 out of 10 pain with a smile on his face. It has been a long journey for Joshua and our family and it is truly an amazing feeling to know we are not alone anymore.

Written by his mother Catherine.

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