Meet Catherine Calhoun (she’s on the left, community member Janis @sneakpeekatme in the middle and me at BlogHer). She’ll first tell you she’s a mother and advocate for son Billy. She’s also a lawyer. An advocate for rare disease. An event planner as long as it benefits research. I had the (extreme) pleasure of meeting her at BlogHer and I’m proud to call her my friend. She doesn’t like to hear about any child in pain, not from medical issues or emotional issues and she’s as compassionate about other kids as she is her own.

I consider meeting her a highlight of attending BlogHer this year and I’m lucky I know her. Follow her around the Internets because you’ll get to witness great things. And if you are lucky enough to meet her in person, buy her a cup of coffee. She loves her caffeine. You’ll see why.

So, tell me about you and your family and why you find yourself being able to identify with the special needs community:

How do I identify with the special needs community? That’s a funny question, because I think back to over eight years ago when a friend of mine was collecting donations for Canine Companions for Independence (CCI), a group that places working dogs with people living with various disabilities. I’m pretty sure I didn’t even listen to her pitch and just wrote her check without really even thinking about. I knew nothing about disability. Mind you, there is plenty of crazy in my family, but never any “gosh, I hope this place has an accessible bathroom” type disability.

When I was pregnant with my younger child, a son named Billy (now eight), that is when I got my first taste of “what do you mean my kid is not gonna be perfect?” We had one strange sonogram and jumped into a bunch of possibilities, read the special medical needs section of the baby guides, and then more sonograms. None of the medical experts were worried when the issue resolved close to the end of pregnancy, but I never shook that worry, the worry that puts a tightness on your throat and heart, I just moved it into a “save for later” box in the back of my mind.

I went in for a sonogram two days before my due date just to see if Billy would be a big baby like his older sister was or not, she was a c-section, and we were thinking that Billy would be too, if he was really big. He wasn’t big and ended up an emergency c-section when the sonogram tech caught that conditions were bad and going for worse that day. I don’t know that he would have survived the weekend if I hadn’t pushed for that sonogram that Friday morning. He was skinny but alright despite the emergency situation.

At about two weeks old, I noticed that he had these birthmarks on his back, big ones. I looked them up in the “What to Expect” and winced when it said something like “talk to your child’s pediatrician if your child has café-au-lait birthmarks because they could be a sign of a serious medical condition.” Gulp. I immediately googled the birthmarks and found the possibility of neurofibromatosis (NF), pretty scary stuff. I was pretty much convinced at that point that he had NF. His pediatrician blew me off, for several years. I pushed to rule things out for the NF diagnostic checklist as much as possible – it’s a wait and see medical condition and can take years for diagnosis.

I freaked out when Billy was delayed for speech at two years old and my speech therapist sister said: “I think he has apraxia.” What do you mean we will be coming to this speech therapy place two or more times a week for years plural. Gosh, if only I had known then. We added occupational therapy when Billy was three to fine tune the fine motor skills. He seemed less coordinated than the other boys. He was not at all a dare devil – no bouncy houses, no climbing to the top of the play sets.

At age four, he played hard one day and was limping the next. We went in for x-rays, oh boy. One doctor then the next and then the next, we got to fibrous dysplasia for the bones (McCune-Albright for the overall deal). They x-rayed for over an hour, and I cried the whole time, just cried and cried.

It’s been almost exactly four years since that limping day. Fibrous dysplasia means progressive bone disease, more and more irreparable damage to the bones day after day, with most of the diseased bone apparent by age 15. For Billy, it also means pain, lots of pain and a walker and wheelchair. I’d say we are pretty firmly planted in the special needs community as we proudly tout our ten pound IEP and go about town with Picasso, a working dog that Billy got from CCI in May 2009.

Supercat Calhoun and her son, Billy

What was your first experience in advocating for your son?

I would say that the most memorable (and likely first effective) experience in which I advocated for Billy must have been when we met our second bone specialist, Dr. A., on the Wednesday following the Monday we first learned that Billy was facing some bone trouble. I had about had it by that point. I had been through the pediatrician, the one who never listened to my worry, and then the first bone specialist whose resident was near tears talking over Billy’s case. I was standing in a tiny, hot, bright yellow exam room with a Daffy Duck print on the wall, Dr. A. was talking over Billy’s case to the four or more residents jammed in the room with my husband, Billy and me, it was almost lunch time, and we’d been on the road and waiting for hours already. I said, clearing my throat and nearly barking I’d imagine, not wanting to cry, and quite loudly I believe: “Someone has to take responsibility here. I’ve been worried about this kid for four years and no one listened. Someone has to do something here. It’s time, do something for my kid, help my kid.” And our kind Dr. A. replied, without calling security on me: “We will try. We will help William.” And that was when I decided he was our guy for sure and dropped the first specialist right then saying: “Can you let Dr. __ know we are using you? We want to use you.” As the residents jaws dropped because this Dr. A. was not even five years out cutting and the other was quite revered. (Now Dr. A. and I laugh about this.)

Rare disease advocacy? Of course, I joined every group, foundation, list serve and the like possible for fibrous dysplasia within the first week of official diagnosis. Within a few months, I knew who the experts were and had read every medical journal article I could find, even the ones that cost $45 and end up being a one-page letter to the journal editor, ugh. One of the foundations, the Fibrous Dysplasia Foundation, posted a notice about six months after the diagnosis that they were looking for board members. I thought to myself that “sure, I can do this, I’m a lawyer, semi-retired, busy caring for Billy, but still.” I was voted on and got to work with that.

Then I applied for a disability advocacy program in Louisiana called Partners in Policymaking, got accepted and learned more though that program than I would have ever imagined. A friend of mine wanted to raise some money so we then decided to raise money for the MAGIC Foundation (in large part because their newsletter, the first one I ever read, was critical to getting Billy the care he needed). Often kids with Billy’s medical issues are harmed by the medical system – doctors don’t know what to do and end up causing more harm than just the fibrous dysplasia or endocrine issues would have on their own. The fundraiser was a success raising more than $20,000 for MAGIC. MAGIC then asked me to take on the volunteer coordinator position for Billy’s specific condition, one guess, of course I said “yes”.

I think I probably take on more and more because the work is so important to me – I know I am helping people who need help more than pretty much anyone else in the world, kids with complicated rare conditions are very vulnerable. And it also keeps me from thinking (so much) about how Billy’s bones are getting worse all the time. Tell us about all the organizations you are involved in and what you’ve been able to accomplish (it’s okay to toot your own horn): In addition to the Fibrous Dysplasia Foundation and MAGIC Foundation, I’ve been busy volunteering with the Children’s Rare Disease Network (CRDN). I’ve been helping with the RARE Blog and social media tools like Facebook and Medpedia. I am most proud of the Father’s Day project we did in June with almost 80 dads participating and sending in the most precious photos I’ve ever seen, it was really exciting to me to celebrate these dads because I personally appreciate how hard my husband works to provide for us.

We do have some good family support from my husband’s parents, but since both of my parents died when I was young that leaves coordinating Billy’s medical care pretty much all to me (I often wish for a mom myself to shoulder the needs). It’s complicated and never easy. I am really excited to be part of the team leading the charge for the Global Genes Project (GGP) this September. GGP is working to raise awareness for rare diseases, disorders and conditions using blue jeans/denim as symbol for support. GGP has an idea in the running with the Pepsi Refresh Project that could revolutionize the way research is funded for rare conditions making it easier for rare groups and foundations to connect with folks looking to support a worthwhile cause. The campaign we are pushing to make a win happen is called “Vote 4 Hope”, please stop by the website www.vote4hope.org to grab a button and show your support. We will need everyone’s help to get the word out and get the votes we need by text, through Facebook and on the Pepsi Refresh website. {can we add these if we have live links/info before publish date on this article?}

How can we help you? Please provide links and tell us what to do!

I need lots of help with Vote 4 Hope – please, everyone reading this, pledge to vote by text, or Facebook, or Pepsi Refresh, or all three. Please ask your family, friends and even strangers to do the same!

What do you find most rewarding about the volunteer/advocacy work you do?

First, I sleep better at night knowing that kids all over the world, and grownups too, are doing okay or just doing better because I helped them. I know what it’s like to be scared and need help, to need information, and when you have what you need, it is a gift.

Second, I always wanted to be a designer. I love beautiful smart things, and even wrote a paper on Frog Design when I was freshman at the University of Dallas. When I get to help craft campaigns like “7,000 Bracelets for Hope” which combine the things I love – handmade thoughtfully designed Etsy-like things – with a cause I am passionate about – rare kids, that is really as good as it gets. {I don’t really have much talent is why the designer thing didn’t work out I guess.}

Any words of wisdom to parents who are just getting into finding their own advocate voice?

It still seems strange to me, and a little sad honestly, that it took my son having a sometimes super terrible health condition to bring out the mama grizzly in me. But it is what it is, and now, I feel like I can do almost anything. I’d say don’t let doctors and researchers, don’t let anyone, intimidate you. Find the people you can work with – the people you can have fun with while making the world a better place. I live in this tiny rural town in Louisiana, and I just started a research fund with one of the smartest researchers around, who knows what will happen – maybe he will find something that really takes the pain away for Billy. I hope so. And every time I just think about it, it lifts me up and loosens the tightness of worry (and feelings of failure and guilt). Really, anything must be possible if I can make this happen from Louisiana. I find a lesson in the trials of my life and a ghost of a gift. I believe Taisen Deshimaru’s words: “To receive everything, one must open one’s hands and give.” That’s what I try to do, and it’s the legacy I want for my kids, especially since there won’t be any money, special needs/disability is very expensive, mentally and dollar for dollar.

Vote4Hope is live!

We encourage you to follow Catherine at her blogs: http://www.calhounbonepainproject.org/ and http://www.supercatcalhoun.com/ or on twitter: @supercatcalhoun