February 17th 2020 marked the beginning of our journey with BCH. We noticed my daughter Harper was breathing fast and working hard to breathe and we rushed her to BCH emergency room and ultimately hours later were admitted inpatient. Harper's was breathing 120 breaths per minute and working so hard to breathe and compared her breathlessness and work of breathing to someone who had completed a marathon. However, this was her breathing all day, everyday and they were worried she eventually get tired and stop breathing. Throughout, Harper received countless tests, saw numerous specialists, had long nights hooked up to monitors, oxygen and bipap machines, and spent over a week in the ICU. After a 25 day stay, we were able to continue Harper's care outpatient.
Ultimately – we still do not have a diagnosis for her breathing issues but found other health issues that were unrelated to her breathing. Harper on top of her tachypnea (abnormal, rapid breathing) she had a moderate Atrial Septal Defect (ASD), which thankfully closed on its own, cysts on her thyroid, fluid around her brain, reflux and hypotonia. Harper also had a tethered spinal cord, which was corrected at BCH when she was 7 months old.
At 2.5 she had a neuropsych eval at BCH which confirmed she is cognitively at a 8 month level and she also received an Autism diagnosis.
Harper is now a very vibrant almost 4 year old and is enrolled in school full time where she can access ABA, speech, OT and PT.
Alongside Harper, I am also running for a beautiful and vibrant 9 year old Finley. At the age of 2.5, Finley was diagnosed with Smith Magenis Syndrome (SMS) by her team of doctors at BCH. SMS is a rare global developmental disorder. The major features of this condition include mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances and behavioral outbursts. Throughout her testing, they discovered Finley was also born with one kidney.
Both of these girls work so hard everyday in school and life - I am so honored to know them both, share their stories and run for them.
Thank you from the bottom of my heart for your donation and support!