Later this week we will be able to welcome Addie home to Missoula. We are very anxious to have her close with all of us. Addie is in a very fragile situation. At this time, only family will be permitted to visit Addie. I know she has profoundly touched numerous hearts – and I know many want very dearly to be able to see her. Once Addie is settled, I will explore with her what she wants her time to look like; I will notify those who will be able to come visit her.
I cannot express how amazing the support has been from our friends, families, the Missoula community, and even people we have never met. We could not have done this with out all of you – not emotionally, not financially, and not logistically. We are so grateful, and feel connected to so many wonderful people. We have been blessed during this difficult time – and I do feel that prayers have been answered and angels have surrounded us.
Because of all of you, we have not had to worry about travel expenses, missing work, or taking extra measures to care for Addie. It has been a huge relief to not have to stress about having the funds to do things right. However, at this time, Ryan and I feel comfortable with what we still have in Addie’s medical fund, and feel like fundraising efforts can stop.
I know what lies ahead will need strength, love and understanding – I so appreciate having all of you on this journey with us. I could only hope that each family that struggles with a rare disease has the support and love that we have been able to experience.
Today is Rare Disease Day. Today is a day to recognize individuals and their families who have to tread the waters of having a rare disease. It a strong current of unknowns: unknown diagnosis, unknown treatments, and unknown prognosis’. It’s a current where one day you feel helpless, and the next hopeful. You keep your head above water – and you keep treading, because there is always a chance you’ll beat the current and get to land.
Love to all, Michal