Brayden’s Story: Braving a Life of Fire

It’s the worst four words any parent could hear when their child is painfully sick: “THERE IS NO CURE.”

Brayden Underhill of Wisconsin was three years old when he had his second clubfoot surgery. Sheena Buffington, Brayden’s mother, noticed odd symptoms following his period of recovery.  Brayden’s feet were unbearably hot to a point she began using a fan to cool them down.  If he stood barefooted on a cold cement floor it helped sometimes.

His symptoms rapidly progressed to where he felt like he was living inside a scorching fire.  His mother felt desperate to relieve his agony, so she began short sessions of soaking his limbs in an ice-filled cooler.

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They visited numerous doctors, but none could provide answers for his unusual, incapacitating symptoms.

Eventually, the frequent ice immersions caused swelling and deep lacerations all over his lower legs and feet.  Brayden was hospitalized, and crippled in pain beyond words.

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“The pictures still make me cry every time I look at them,” his mother said.

The family continued visiting different physicians but no one knew what it was, or how to treat it. Sheena spent hundreds of frantic hours on the internet trying to diagnose her son’s condition. Brayden would have to wait two more grueling years for a diagnosis.

“I was so frustrated, and I couldn’t stand seeing my child in such pain. I wanted answers, and I wanted it treated fast,” Sheena recalls.

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Finally, after several long-distant excursions to and from the Mayo Clinic in Rochester, Minnesota, a dermatologist gave them the devastating news. Brayden had a rare disease called Erythromelalgia (EM).  It affects 1.3 in 100,000 people, and there is no cure.

EM causes severe burning pain, evident redness of the skin, swelling, and increased skin temperature. The exact underlying cause remains unknown. However, it’s thought to result from vasomotor abnormalities or dysfunction in the normal constriction and dilation of the caliber of certain blood vessels, leading to abnormalities of blood flow to the extremities.

There isn’t a standard treatment for EM, and sometimes nothing helps.  Brayden has tried a bunch of different medications, and dealt with horrendous side effects.  Some of the prescriptions actually made the EM more painful.

Since the age of 3, Brayden has averaged about four hours of sleep a night (confirmed through a sleep study).  He sleeps bent over the bed with his feet hanging off so he can feel the fan’s breeze on his legs. He often wakes up in the middle of the night, struggling with pain.

Eight years later, 11-year-old Brayden still lives with crippling, chronic pain. His disease has progressed to his legs (from the knee on down), hands, ears, nose, and cheeks.  He feels like he is burning alive. He uses a fan almost 24 hours a day, and cannot tolerate shoes or socks.

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Brayden is in the 6th grade, and still manages to attend a public school with the help of his wheelchair and a portable fan he keeps near his feet. His mother debates having him home schooled because she feels it’s so important for him to be around other children. The school system has worked with his parents in making adjustments for his physical limitations.

“He has come home from school, feeling sad after watching his friends play football or basketball, knowing he can’t participate,” his mother said with sorrow.

Brayden describes his intense burning as “feeling like my body is crying inside.”

He finds some small relief by crossing his legs and pulling them tightly against his chest. However, his physical therapist has discouraged him from doing this because overtime it could permanently weaken his posture and muscle integrity.

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“After you get over being mad, and frustrated that no doctor can help him, we realized we needed to live with this. We try to come up with different ways to do things.”

Brayden has anxiety about leaving the house because he worries how his limbs will behave.

One time his family drove two hours to the zoo when Brayden overheated, and within 10 minutes he was in dire need of cooling packs and cold wet towels. Those methods didn’t provide any relief so they tried their vehicle’s air conditioning, which also didn’t work. They ended up having to leave.

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“Every day I wish I could make all of this all go away so he can live a normal life,” his mother said.

He currently sees a pain specialist, neurologist, and pediatrician. Most often, he sees the pain management doctor.

Distraction is key when it comes to Brayden’s physical and mental survival. He enjoys playing games on his Xbox, and watching movies and YouTube videos. His favorite action hero is Batman. Occasionally he’ll have a friend over, and might try to play outside for 30 minutes if it’s cool or cloudy.

Strangers have called the police claiming child abuse, after seeing Brayden’s parents carrying him outside barefooted during winter months. On another occasion, authorities were called while Brayden and his family were dining together in a restaurant, again assuming he had been a victim of child abuse. His parents requested a doctor’s note to avoid such encounters in the future.

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(Pictured above: Dad (Troy), Mom (Sheena), Sister (Jade), and Brayden)

“Coping as a family has been incredibly hard, but every day we learn, and try to find ways to accommodate Brayden’s needs,” Sheena said.

Brayden and his family have learned to deal with the constant staring and comments from strangers. Typical remarks include: “Wow, you’re really sunburned,” or “Did your legs get burned in a fire?”

He’s embarrassed to be seen in his wheelchair so he only ventures to the local department store about twice a year.

His mother would love it if others could show Brayden their support, so that he doesn’t feel so alone in the world.  Perhaps people could share a photo or words of encouragement on their personal social media account with “#BraydentheBrave” to let him know people do care, and it’s okay to enter a department store with a physical disability.

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This article is also available on The Huffington Post:

http://www.huffingtonpost.com/melissa-curley-bogner/the-brave-boy-trapped-ins_b_9843794.html

To read my other article on Erythromelalgia on The Huffington Post:

http://www.huffingtonpost.com/melissa-curley-bogner/burning-for-hope_b_9618652.html

Erythromelalgia Awareness Video:

 

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Author: melissaannsite

I'm a 40-something year old woman who has lived a life of adventure so far. I'm an ENFP Virgo with no judgment in my heart on others. Everyone is entitled to live their life as they wish, but I still enjoy the humor that life has to offer... and the memories.

21 thoughts on “Brayden’s Story: Braving a Life of Fire”

  1. Hi Brayden. I too suffer from EM and want to let you know you are not alone. You are a brave young man and we all pray there will be a cure soon. We have a support group if you would like to join us. It is a private group but costs nothing to join. https://groups.yahoo.com/group/EM We are all on different types of medications and treatments. Maybe reading some of our stories will help you.

    Liked by 1 person

  2. Hi Brayden, I suffer have suffered from EM since I was 17 but not as bad as you. At age 61 I tried a medicine that helped me out a whole lot. It was topamax. Don’t give up trying. I will keep you in my prayers.

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  3. #‎BraydentheBrave‬ – You are amazing Brayden!! And you are not alone. Many people (including me) have EM and we totally understand your pain, as well as the frustration that comes with trying to live a normal life. I hope you find something that offers you relief and the ability to do all the things a boy your age should be doing! Thank you for sharing your story with the world!!

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  4. Hi Brayden,
    You’re life is exactly like ours. I have a husband and three small children with EM. It is absolutely debilitating and my children have anxiety about leaving the house, too. Their body positioning and coloring are exactly like yours. We have portable AC units in their rooms and they put their bodies in front of it to help. My son is 8 and my two daughters are 6 and 1. They have had their condition since birth, as it is a matter of SCN9A gene mutation. We get the same ignorant comments when we are in public. And my kids feel embarassed when they can’t help but cry from the intense pain when we are in public. You are not alone! For us, ice packs, AC, Fans and distraction make life endurable. Plus we live in a relatively gentle climate. Spirituality has been a life saver for my kids. We are just about to start them on the path of prescription medicines to see if anything can help. Hang in there! You and your family are the toughest sort of people!

    Liked by 1 person

  5. Hi, my name is Christa, we live in South Africa. My son has em since he was very young! He’s twenty five now, and he suffers a lot!! I still have difficulty accepting his condition some days as its not fair!! My other kids are fine😢

    Liked by 1 person

  6. Just reading this story, and the horrible suffering behind it, I started thinking about cooling clothing. This company makes a vest that maintains a cool temp for up to 3 hours by using frozen inserts. I’m wondering if they would consider other types of garments that could give some relief for periods of time? I’m always geared toward solving things, and maybe I don’t know enough about it to judge whether this is a dumb or good idea, but thought I’d mention it.

    http://www.lakeland.com/our-products/chemical-protective-clothing/cool-vest.html

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  7. Hi..I just came across your story on facebook and it touched my heart. When my daughter was 11 years old she started having a burning sensation in her hand. Doctors couldn’t figure out why at first. We went to see a local neurologist and we were quite lucky that he had seen a case of EM 30 years ago and told us that was what he thought it was but had no idea how to treat it. It quickly spread to Sydney’s other hand and both feet. Through research I was able to get her into a research program at Yale. She tried many meds. Some things would work temporarily but then the pain would come back. Eventually it spread to her ears and nose. She missed a year of school. After a year Sydney agreed to see an acupuncturist. It’s not something I ever believed in but we were desperate. She was living on vicoden and occasionally morphine. We went to see Frank Butler at Evolve Health and Wellness (formerly known as Soho herbs) in NYC. It was a shot in the dark. After 2 weeks there was a huge improvement. Sydney no longer needed a wheelchair. Sydney has not taken pain meds since. Frank was able to get her off of her long list of meds. We went to the acupuncturist twice a week and Sydney drank a special herb concoction every day. Most were quite disgusting and it wasn’t easy for her to do. Many times they made her vomit. She did this for a little over 2 years. Sydney has her life back. After one year of treatment she was able to wear shoes again. She now lives a completely normal life. The doctors at Yale can’t really explain it. Her body still has trouble acclimating to climate changes but nothing like the pain in the past. She just finished her junior year at college. Something we thought would never happen. If it is at all possible for you I would try acupuncture. if you are not in the NY area Frank has always offered to talk with other acupuncturists. I hope this helps.

    Liked by 1 person

    1. Sharon- Thank you for your story. I work in a Wellness Center nearby Brayden and we have an acupuncturist here. If you would, please email me as I would be interested in learning a bit more on this holistic method so we could see if this may be a possibility to connect the 2 acupuncturists for him, if his family is interested. My email is hamptondawn@gmail.com.
      Thank you!

      Liked by 1 person

  8. Brayden you are an amazing strong boy! I also have EM and traveled to the Mayo clinic where DR Davis diagnosed me. I will keep you in my thoughts. Thank you for sharing your story.
    Morgan

    Liked by 1 person

  9. You are far braver than I Brayden. I have EM and I am currently being studied at University Hospital in Aurora, Colorado. I have been on everything under the sun and nothing has helped. When my friends ask me why I would put my body through all these tests I tell them it’s not for me it’s for you. It’s for all the kids who suffer from this horrific disorder. If I can be a part of an answer or cure then my pain isn’t in vain.

    Liked by 1 person

  10. Hi Brayden, Thank you for being so courageous and sharing your story with the world. I’m 36 years old and have only been suffering from EM for nine months, but I have found a ton of support online in Yahoo Groups and The Erythromelalgia Association. You might find help and support with those groups too. Please join us if you need a place to vent; it’s nice to know you’re not alone. Thanks again for your leadership in sharing your story and for helping to educate the world about this condition. Big hugs!!!

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  11. Hang in there little buddy! I am so sorry you have this condition, I do too, and I’m an old lady, sure hurts, doesn’t it bub? I will keep you in my prayers and really hope the Docs find something to help! I try to put lotion on my feet and legs twice a day, helps a little, not a lot, best of luck and love to you! Using Lidocaine cream helps once in a while, I pray for a cure in your lifetime! Laughs and Love. Gael

    Like

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