Wednesday, February 27, 2013

Rare Diseases Day: Let's All Dare to Be Rare!

Another year finds us at another Rare Diseases Day. This is really an incredible day to unite with other children and families affected by rare diseases and the challenges that entails. Being affected by a rare disease, whether you have the diagnosis or whether a loved one has it, can change your entire life style, your entire reference for what is your family's personal "normal." This year's theme is "Rare Disorders Without Borders." When I hear that, I can't help but think of the amazing families and medical professionals we have met along our children's journey with FPIES.

It is an interesting journey indeed, and along the way we have met people that we never may have crossed paths with otherwise. And now I can't imagine our lives without those encounters. Each person along the path has the opportunity to touch others on the road, to lift someone up, to affect change on both a large scale and on a personal level.

I have seen a lot of families come and go. It is very encouraging to see others moving on, especially when it is because their children are outgrowing their FPIES symptoms or because their diet has become far more manageable. To be honest, it is hard to be the ones not moving on. Sometimes it feels like being left behind. It doesn't detract from any joy I feel for the other families, however. Knowing these feelings, I cannot say enough how appreciative I am of the families that do not forget, those that may move on, but do not leave others behind.

Just recently, I have seen a handful of mamas posting about their children's successes with outgrowing FPIES. It is so encouraging seeing these families returning to the support groups that once lifted them up to do exactly that for other families-- to lift them up. To encourage. To tell them that it doesn't stay dark forever, that there is hope, that there is change.

I know there are also families that have moved away a bit from the groups because their children are older but their FPIES symptoms remain unchanged. As a parent of an older child with FPIES, I know how hard it can be sometimes to stick around and watch others move forward as our children seem to be stuck. But these families still reach out, continue to use the knowledge they have to share with others, in hopes that the next family will be helped, maybe they won't have to reinvent the wheel. . .

The doctors and other health professionals that we have been so fortunate to have care for our children have made far more of an impact than I think they realize. Yes, I feel like my children receive excellent medical care. But beyond that, I feel like my children are supported by practitioners that care about them, not only a simple diagnostic code on a page. My children's quality of life, developmental milestones and personalities are all considered. When B was a baby, her old doctors viewed us as a problem-- it was even written that way in her chart. They did not view her situation as something requiring help or answers, even when she arrived unconscious at the ER just a few weeks before her first birthday. With B's current care team (whom we love), they view her and her sister as people (tiny, adorable people) that deserve the same dignity, respect and consideration as any other child or adult.

So as we celebrate Rare Diseases Day, let's all "dare to be rare"--- instead of moving on without looking back, or instead of seeing a child as nothing more than a diagnosis, let's reach across the borders that these choices create and remember how we felt the first time someone in this community connected with us. Let us all remember how to lift one another up, how to be a light in someone else's darkness, and how to see each child as a special little person, unique in his or her needs and abilities, and not simply a name attached to a diagnosis. To all of you already being this light, thank you for making the choice to dare to be rare. As I always say, the road of FPIES is a difficult one, but thank goodness that the company is great. Happy Rare Diseases Day!

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