The story of Jackson
Born in 2009, Jackson had lots of minor health issues throughout childhood that always seemed random and unlucky but not part of a bigger picture. Enlarged left kidney at birth, cholic, quick weight gain even obese at various stages, RSV, delayed gross and fine motor, 3 broken bones, hypothyroidism, adenoids and tonsil surgeries, ear tubes, asthma, sensory processing disorder, ADHD, learning difficulties in school and most recently noticeable a short 4th finger on each hand with no visible knuckle. Because of the hypothyroidism Jackson is followed closely by his pediatric endocrinologist and has labs taken every 6 months. When his calcium levels recently dropped to dangerously low levels and phosphorous climbed too high but his vitamin D was normal it was a red flag to her that something else was going on. All of the random pieces of the puzzle we struggled for so many years to put together finally had a name. Pseudohypoparathyroidism. A rare genetic disease that occurs when your body is unable to respond to parathyroid hormone, a hormone that controls levels of calcium, phosphorus and vitamin D in the blood. The condition is also associated with a group of symptoms referred to as Albright’s hereditary osteodystrophy, which includes short stature, a round face, obesity and short hand bones. While not a life threatening condition, treatment is focused on managing the symptoms for a lifetime. With the introduction of new meds Jackson’s calcium and phosphorous levels have returned to normal ranges and a plan has been developed to keep the growth plates open as long as possible to allow for as much growth potential as possible. To the average person Jackson is a well adjusted, kind, social, athletic boy who loves everything there is to know about sports and sports stats and there are no outward clues that he has a rare genetic disease that he has to manage every day. So in a way that’s a good thing but we also want to shine a light on how hard he has to work mentally and physically to keep up with his peers and the responsibility he has had to assume with his medication regime and frequent blood draws that make him an extraordinary strong and brave kid.