Q&A: ‘Beyond the Diagnoses’ exhibit will feature local student

This is the portrait of Emma Clatterbuck that is included in the “Beyond the Diagnosis” art exhibit.

As doctors, researchers and others in the medical field view a traveling art exhibit throughout the nation, one of the faces they’ll see belongs to Emma Clatterbuck, 9, of Marietta.

The Putnam Elementary student was selected to be part of the “Beyond the Diagnosis” exhibit that will be featured at the National Institutes of Health, Harvard University, the FDA and other sites. Emma was diagnosed at age 5 with a genetic mutation–STXBP1–that causes Epileptic Encephalopathy, a rare and very serious form of epilepsy.

Due to the condition, Emma can’t talk. But her voice will still be heard as part of the exhibit, which features portraits of 60 children, all who have a different rare disease. Organizers hope to someday represent 7,000 rare diseases in an effort to humanize those with the diagnoses and inspire further research.

Emma’s mother, Jennifer Clatterbuck, will be traveling to Boston on Thursday for a private showing of the artwork.

Question: Can you tell me a little about the exhibit?

Answer: It’s a traveling exhibit created by the Rare Disease United Foundation, which was started by a mom with two children who have rare diseases. Through the exhibit, they wanted people to actually see the person behind the diagnosis. The artists donated their time and had the freedom to use whatever technique they wanted. The artist that did Emma’s portrait is actually a professional automotive artist–he paints cars.

Q: How did the process work? Did he paint from a photo or get to see Emma?

A: He used a photo that we had sent in.

Q: Did you like the portrait? Do you think it was in Emma’s likeness?

A: It’s almost identical to the picture he used. It really captured the look in her eyes, too. I think he did a very good job, especially with never getting to meet her.

Q: You’ll be going on March 1 to see the portrait in person?

A: It’s a private showing at a drug company and they’re really excited about me going. The idea of these exhibits is to place them on medical universities and places researchers and doctors frequent. They want to raise interest and awareness in studying these diseases.

Q: How was Emma selected?

A: A friend of mine sent me the CBS (News) episode on the exhibit and online there was a form you could fill out. It said if you were chosen you wouldn’t know until they had already painted the portrait. I sent it in over a year ago and got an email in the fall.

Q: What does it mean to you that in all these places Emma’s face will be there representing her illness?

A: Her gene mutation is still very, very new and there’s not a lot known. When I go to the doctor’s and ask what they know, they tell me I’m going to be the expert. Parents just know more than doctors at this point. For five and a half years we had no idea why she was having seizures, why she couldn’t walk or talk. To now know and not only know but to get to help spread awareness, is kind of special. To be one of the pioneers I consider to be a big deal. Emma is representing the entire STXBP1 community.

Q: How many cases like hers have been diagnosed?

A: Right now, there are fewer than 300 diagnosed cases and probably more undiagnosed. Hopefully, another thing to come from this is that doctors will start testing for it.

Q: If there are people in our community who want to help in some way, what can they do?

A: They can visit stxdisorders.org. That’s the main site for the foundation.

Q: How is Emma doing these days?

A: She just had hip surgery so she can’t go to Boston but she’s doing really well. Her recovery was slow, slower than we thought, but she’s not had any serious seizures which is always a concern after surgery.

Q: What’s she interested in right now? What makes her happy?

A: She loves to be outside and going to school and being around other kids. She’s really sociable.

Q: What do you hope is the main message people get from this exhibit?

A: There’s a book of the portraits and in the front they say something that’s really neat. It says “It’s not what you look at that matters, it’s what you see.” I think that’s what this exhibit is all about. It’s about getting people to look past what they see on the outside and to look beyond that.

Kate York conducted this interview.

Emma Clatterbuck’s Biography

When people see Emma, they see a child who is wheelchair-bound and unable to speak or share her thoughts. I know many people wonder what her story is and why she is the way she is. What they don’t see is that Emma has been a kind of teacher since she entered our lives. She has taught us what is important and what is okay to let go of. She has taught us love and kindness. She has taught her teachers and classmates acceptance, creativity, and patience. She has taught every person who has crossed her path and taken the time to get to know her, joy and how to appreciate every day and the special moments found in each one. Since her diagnosis, she has participated in a number of research studies and through them, will hopefully help teach the medical community about STXBP1.

¯ Note: This bio was written by Jennifer Clatterbuck and included in the exhibit materials.

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