On this rarest of dates, we are observing Rare Disease Day in honor of Raina and all the people and families who are affected by unique maladies.
Though we never knew that there was a need for a day like this, we have learned that you need to bring attention to a rare problem in order to find a difficult solution.
Many people suffer from the symptoms of their rare diseases because effective treatments and cures are more difficult to develop when awareness of the disease is low. Funding for research and pressure from the general public for treatments won't happen in the same way that they do for more common conditions.
We have to take extra steps, like observing and spreading the word about Rare Disease Day, to help bring about the relief that many people desperately need.
I would also like to share some personal thoughts about having a child with a rare disease.
For two months I have been asking a lot of "why" questions.
Why would this happen to our sweet daughter?
Why would this happen to any child?
Why do people suffer?
These difficult questions probably have no definite answers, but seeing what has happened since we discovered that Raina has FOP may provide a hint.
Our family has experienced an overwhelming outpouring of support and love from friends, family, and people we don't even know.
It has brought people together and created ripples of positive thoughts and actions that may not have happened otherwise. Maybe it took these terrible circumstances for the true nature of our support group to be shown and felt. Maybe people see a terrible negative happening and decide to combat that with amazing positives.
Maybe people find their better selves through personal tragedies.
If this is true then Raina and many others are sacrificing for the greater good of humanity.
We must support these people in order to lessen their burden, but we must also do our part to complete their sacrifice. Enjoy your good health, spend time with loved ones, help people in need, do what makes you happy and don't take for granted what others can never have.
Raina has always been rare and special, and FOP only confirms that she has a unique path in this life. Her rare condition will not define who she is but will only serve her in creating joy and happiness in others.
If you know her, you know exactly what I mean.
Please help her make the world better by becoming your best self.