Harper Lynne was diagnosed with a rare chromosome deletion of 5q14.3 on her first birthday. After researching this deletion we recognized that our little girl will be experiencing many developmental delays. We were ready to take on this challenge and quickly got occupational therapists, physical therapists and developmental instructors involved. We were ready to help our child. But what we weren't prepared for was at 18 months Harper began getting fevers every three to four weeks. These recurring fevers would spike very high and cause seizures that would send Harper to the hospital. We still aren't quite sure why her fevers reached such a high temperature. After many visits to the ER and to specialists, we have strong medicine that we could administer at home to Harper after a seizure. This medicine would quickly quiet her down while reducing the side effects and help her recover more quickly. Once again, we were ready to help our child through this tough time.
Shortly after her second birthday, Harper went to bed with a slight fever. In the middle of the night this fever spiked extremely high causing a severe seizure that went undetected. We woke up to the sight of our little one seizing and we weren't sure for how long. Unfortunately, this seizure did not wake us. The longer a child seizes the longer the recovery period is as well as the possibility of regression. Once again we have reached another challenge. The side effects from this seizure were heart breaking, brief loss of sight, no hand-eye coordination, could not sit or crawl or feed herself. This seizure took our 2 year old that was progressing so well back 18 months. Harper regressed to a 6 month state. For the following six weeks we had diligently worked with Harper to try and achieve the goals she worked so hard on in her first two years of life that were quickly taken away from one serious seizure. We put her on a a seizure medicine that would prevent any seizures in the future.
Harper was on two different medicines to control her seizures. Currently, Harper has been seizure free for 3 years and off any medicine for two. At this time we are currently on the quest for a therapy dog that would help Harper in her daily life. Thank you for taking the time to read Harper's Story and please continue to visit our website for updates on our beautiful little girl.