Harper Natalie is our beautiful, sweet, innocent little angel, and is currently fighting for her life. Please fight with us! While Sarah is needed with her full time, we could all help out with overwhelming medical and travel expenses, and give them one less thing to worry about. Please give what you can to support this amazing little girl and her family!
Harper's Story (update from Sarah):
On June 29th 2018 our Harper Natalie was born at Sacred Heart Medical Center. At 5lbs 8oz and 18.5 inches long she was a healthy beautiful baby girl that instantly filled our hearts with more love than we could have ever imagined. She was the little girl that I had always wanted and had waited so patiently for. For the next four months Harper developed normally with a perfect growth chart hitting every milestone right on time. She was the happiest most easygoing baby we could have ever hoped for. All of her needs were easily met and our days were full of her enchanting smiles and infectious giggles.
Then at the end of October a few days before her four month check up everything changed. She became extremely fussy and even inconsolable at times. After ruling out any obvious cause her pediatrician began a workup for reflux. Harper was prescribed reflux medication and we were referred to a pediatric gastrointestinal specialist who happened to be booked months in advance. As the days went on Harper became increasingly irritable and lethargic. Willing to try anything that might lesson her symptoms I stopped nursing and we began a trial of dairy free formula. Then after receiving the results to her traumatizing barium swallow test a diagnoses of severe reflux was confirmed. But I was no longer convinced that it was just reflux. Harper had seemingly stopped developing and now spent most of her days either screaming or sleeping. Harper was regressing in her milestones and could barely stay awake for longer than ten minutes at a time when she wasn’t crying. I began noticing that her morrow reflex was not going away and was actually more pronounced now than ever before. Harper would no longer participate in tummy time and her neck became weak. She could no longer roll over and showed little interest in her toys. Suddenly she could barely lift her hands above waist height in attempts to grasp objects and her babbles became less and less by the day.
The next week was full of Doctors appointments pleading our case, but because of her temperament they were unable to adequately asses her neurological symptoms. I searched the internet night and day for answers to what may be causing her symptoms while we made desperate attempts at self referrals to pediatric neurologists to no avail. Terrified and at our wits end we went back to our pediatricians office and he was in agreement that we could wait no longer for something to be done and thankfully on November 29th we were directly admitted to Sacred Heart Medical Center. We drove straight from our pediatricians office to the hospital and that night our worst fears became a reality. Harpers CT scan showed nonspecific brain lesions. The next day our 5 month old baby was given anesthesia in order to perform a five hour long MRI that showed something much worse than we could have ever imagined. Harper had suffered large metabolic strokes in multiple areas of her brain causing her regression along with other symptoms of lethargy, irritability, dystonia and clonus. The next two weeks were full of tests that no child should ever have to endure. Harper had numerous EEGs, Lumbar punctures, blood draws, arterial punctures and a repeat 6 hour MRI. During our stay we saw multiple neurologists and geneticists all hypothesizing about a different diagnosis each one having a prognosis worse than the one before.
On December 11th we discharged home with no answers just promises of genetic test results in early January if we are lucky. We have since been back to the hospital with new neurological symptoms and increasing irritability. We continue to adjust and add to Harper's medications with a goal of keeping her comfortable while we wait to hear her fate. The doctors are now fairly certain that she is suffering from a mitochondrial disease but may not be able to narrow it down to a specific gene. We are hopeful that a diagnosis could mean better treatment options but at the same time fearful of a devastating prognosis. We will soon be traveling to Seattle Children’s Hospital to see a mitochondrial disease specialist in hopes of more treatment options and/or answers. I must tell you that every day is a struggle trying not to dwell on the life she is missing out on. We are praying for miracles and at the same time trying to prepare ourselves for anything short of one. Our beautiful strong Harper shares with us her strength in every smile, giggle and moment she blesses us with her presence. We cannot give up on the hopes and dreams we had of a normal life for our daughter we just love her for who she is in this moment and in every moment we have with her.
If you’d like to follow along with Harper’s fight, please add her on Facebook and join us at https://www.facebook.com/profile.php?id=100031537715065