Dare to be Rare

Dare to be Rare

When Lyra was born, her diagnosis of albinism was a shock to all of us. The weeks and months following were a time of confusion and worry about what it all meant.  Neither my husband nor I had ever seen someone with albinism in person.  One thing that we really wanted to be able to do was to meet and connect with an adult with albinism.

The very first person with albinism we met after Lyra was born was a local woman named Heather Kirkwood.  The first time we met Heather was at our NOAH Bowl-a-Thon in 2007.  Since then, she has joined us at all of the bowl-a-thons we’ve had and attended all of our other local albinism events.  She helped in the planning of and was a presenter at our local NOAH Mini-Conference a few years ago.  She also attended one of Lyra’s very first IEP meetings as one of our education advocates. Over the past 5+ years, Heather has been a mentor and a wonderful source of support.  Heather has truly become a great friend.

One of the unique things about Heather is in the type of albinism she has.  Heather has Hermansky-Pudlak Syndrome (HPS).  I have not talked about HPS much and I’m really ashamed of myself for having never written a blog post about it.  HPS is a type of albinism which includes a bleeding tendency and lung disease. HPS may also include inflammatory bowel disease or kidney disease. Heather is also the Vice President and Director of Outreach for the HPS Network.  As one of the projects of the HPS Network, Heather was followed around by a film crew for 3 years and is featured in a recently released documentary called RARE.  Two other people featured in the documentary are Donna Appell, who was on the NOAH Board of Directors with me, and her daughter Ashley Appell.  As an example of a parent advocating for their child’s needs, Donna is best I’ve ever seen.  She is a shining example, a role-model for any parent of a child with special needs.

Next Tuesday, September 18th at 7:30pm, there will be a screening of the RARE documentary here in the local area at Homers Coffee Shop, in Overland Park. I invite anyone and everyone, who lives within driving distance, to attend the event!  For a sneek peek, please watch the very inspiring and touching video below.

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