Rare Disease, from the perspective of family friends

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Also posted on: The Children’s Rare Disease Network

To know Nora, Ayrie and Shiya is to absolutely love them.  Spend an hour with Nora and you’ll see how much she cares for her boys, spend a day with her and you’ll see how strong she fights, spend a couple more years with her and realize what perseverance really means.

Our relationship with Nora started quite simply, “hey, we’re going to go baby-sit for my boss. She has a little boy who has some sort of disease in his throat, so he may talk quietly.”  Nora started as Richard’s boss at a charter school in Chicago, and Christa came along for the ride when she found out Richard was going to be watching two boys on his own (one of which was a newborn).

After a night of fun with Ayrie (I think we sang Old McDonald about 30 times), and after a night of realizing how sweet newborns can be, Christa finally worked up the courage to ask Nora what was wrong with Ayrie.  A mouthful, at the time, we learned he suffered from a rare disease, Recurrent Respiratory Papillomatosis (RRP). Tumors grew on Ayrie’s vocal chords and made it difficult for him to breathe.  He would go into surgery every month or so to have them removed before they spread–it sounded simple enough, right?

I’m not sure if Nora even knows this, but there was a moment when I, Christa, realized the true weight of the situation.  I was watching Ayrie, and Nora had set us up with some finger paints.  Her sister Emily (a true angel on earth), came into the apartment, and in the next room I could hear Nora crying.  I could hear her saying, “what am I going to do?”  She came out and she took Ayrie in her arms and just held him, kissed him and hugged him.  Pizza shortly arrived, and I remember sitting in her family room and thinking, what would I do if I was in her situation?

We both thought that if you had a child who was suffering from a rare disease that you just curled up, you cried, you shut yourself out from the world.  A naive perspective, we know, because Nora did the exact opposite.  She fought for her son.  She sought out the best medical care and found it!  She was determined to establish a support system for other parents and guardians who are helping to fight alongside their loved ones as they battle rare diseases.

So what has Nora taught us?  She’s taught us simply to never give up!  While we’re training for the Chicago Half Marathon (we’re running in honor of Ayrie), we’re thinking of her and the boys.  We’re realizing how lucky we are to be able to suck in another gulp of fresh air.  Sure quitting is easy, but pushing through, persevering is what changes the world.  We have no doubt that is what Nora is doing. We’re honored, proud and incredibly lucky to have had our lives cross paths.

By Christa Koskosky of Running for Ayrie Blog.