Portia was diagnosed in November 2018 at 4 years old. Her treatment lasted 2 1/2 years. Portia was hospitalized over 18 times during treatment and suffered many side effects due to having Down Syndrome. She often didn’t understand what was happening.
Portia was very tired for about a month before diagnosis. We took her to the Dr and were told she was just tired from starting school. She began getting petechia but we didn’t know what it was. One day she fell and hit her lip and it wouldn’t stop bleeding for 2 hours. She woke up the following morning and her lip was black- we took her to UrgentCare and were told her lip was infected and the petechia was an allergic rash. The next day she was covered in the petechia and the nightmare began.
Portia has had countless blood transfusions., platelet transfusions, spinal taps every 3 months for 2 1/2 years, hospitalizations, bone marrow biopsies, and pneumonia, she was pulled out of school for 2 years because she was so fragile. we drove an hour away sometimes 3/4 days a week she was so sick and that is where the children’s hospital is.
Life was rough. We have a big family and our children were home with their older sibling- who was a God send. We missed our son’s games and countless school activities, and I lost my position at work for missing so much time. It was rough for all of us. My other kids were missing us, missing Portia, and just trying to cope.
Portia is strong and brave and definitely, her diagnosis and fight brought our family closer.
Hope session by Megan Mumford Photography | Instagram