The Solberg Family

Maisie was born with healing loss in March of 2018. Around a month old she started to be sick quite often.  As the months past her delays became more prominent.  She hated tummy time, difficulty breathing, never giggled, did not want to crawl or stand, among other things.  In December of 2019 she required a weeks long hospital stay due to RSV.  During this hospitalization Drs began to question her delays and abnormalities.  Further testing was done and in February of 2019 our daughter was diagnosed with MPS 1.  MPS 1 is a terminal genetic disorder that has no cure. We traveled to Minneapolis MN in February to speak with their Bone Marrow Transplant team to discuss the options available to Maisie in hopes of prolonging her life.  In March of 2019 we traveled back to Minneapolis for a weeks worth of appointments and evaluations.  We were notified in April they had found a match and we would need to relocate to Minneapolis for at least 4 months for her transplant.  She received a transplant in May of 2019.  I have been unable to work in order to be her caretaker since April.  Her father has also taken leave to be here with her as she endured a 6 hour surgery for line placement, feeding tube placement, chemotherapy, and blood transfusions, just to name a few. He has been traveling back and forth to work when he can and also to be here when possible.  Steve also has his own medical issues with Crohn’s Disease which also require him to be gone from work for infusions.  Due to Maisie being immunosuppressed she will need to be cared for at home until she is cleared to be in public, which will require one of us to be home with her.