How a Grieving Mom Taught Doctors About a Disease They’d Never Heard Of

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Sawyer just a month after his ALD diagnosis in April 2013

Janis Sherwood lost her son Sawyer 13 years ago to a disease she — and most doctors they visited — had never heard of: Adrenoleukodystrophy (ALD). It’s a genetic disease that “damages the membrane that insulates nerve cells in your brain.” Symptoms of ALD are similar to Attention Deficit Disorder (ADD), but ALD progresses rapidly and leads to a vegetation state and death if it’s caught too late, according to the ALD Foundation. If detected early, patients have more options for treatment and a better chance of surviving, according to the Stop ALD Foundation.

Sawyer was diagnosed with migraines, ADD and eventually spinal meningitis. While signs of ALD were present by the time he was 2 and a half years old, doctors didn’t know he had ALD until it was too late. He died when he was just 8 years old, six months after his diagnosis.

Sherwood knew she wanted to raise awareness for the rare disease even before Sawyer died, so she started Fight ALD to save lives through educating people about the early onset symptoms and diagnostic tests.

“I went to a conference with mostly medical students, and I realized about 75 percent of the people I talked to had never heard of ALD,” Sherwood told The Mighty.

After reading a story about a man’s cross-country road trip in The San Diego Union Tribune, Sherwood was inspired to take her awareness efforts across the continental United States. A family friend donated an RV, and Sherwood took off across the country, stopping at children’s hospitals along the way to drop off pamphlets she created about ALD symptoms to detect early diagnosis. She began in Long Beach, California, but soon realized she needed to visit more than just large research hospitals. What started out as a five month trip turned into a five-year, 44,000-mile journey.

A map of Sherwood’s route

Sherwood traveled to every state in the continental U.S. and visited more than 3,000 medical facilities.

“I did everything I had set out to do,” she told The Mighty.

Throughout the five-year road trip, Sherwood returned home to California sporadically to regroup. In between dodging hurricanes in Miami and Boston, facing RV engine trouble and dealing with some hospital employees that quickly ushered her out their swinging doors, Sherwood managed to also find time to fundraise.

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Sherwood’s RV in Arkansas

The Sherwoods moved to California in 2000 because Janis’ husband, Bill Sherwood, got a job with Stone Brewery, and the company has been part of ALD fundraising since Sawyer’s diagnosis in 2003. Stone Brewery drafted a special edition beer with Bill Sherwood’s recipe called “Sawyer’s Triple” initially to raise money for Sawyer’s potential bone marrow transplant. Sawyer died the day before the beer was released.

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Sherwood and her brewery festival volunteers

The initial money from Sawyer’s Triple sales helped get Fight ALD up and running, and this August will be the 10th year Stone Brewery’s beer festival donates part of its proceeds to Fight ALD.

After getting involved with Stone Brewery’s festival, Sherwood started fundraising for Fight ALD through other beer festivals. She organizes a group of volunteers in exchange for donations from the festivals. “I guess the word got out there that I have really good volunteers,” Sherwood told The Mighty. “We kind of came up with the slogan ‘drink beer for charity.’” Other than Stone Brewery’s festival, Sherwood has raised money through both Guild Fest and Rhythm and Brews in San Diego.

Although Sherwood’s cross-country journey is over, she isn’t going to stop fighting ALD anytime soon. She’s proud of victories so far — California Governor Jerry Brown signed a law in September 2014 requiring newborns in California get screened for ALD, but screenings haven’t actually started yet. She ultimately wants all newborns worldwide to be screened for ALD. She continues attending medical conferences and urges parents she meets to get their babies screened, a test that costs about $170 right now.

“Early diagnosis… that’s the key take away,” Sherwood told The Mighty.

You can read more about Sherwood’s fight to stop ALD on her website.

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When the Doctor Commented on the BMI of My Son With Autism

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Last week, we had my 11-year old son Jack’s check-up, and my stomach sank when the doctor quietly pointed out his higher-than-average body mass index (BMI) on his chart.

You wouldn’t know this to look at him; he’s pretty tall for his age with the longest, skinniest legs in the world. But he’s solid, and like many kiddos on the autism spectrum, he has low muscle tone.

“You don’t need to worry just yet,” the doctor said kindly while Jack tried to remove the stethoscope from his neck. “But you do need to be watchful.”

Watchful? Is there any single aspect of this boy of which I’m not watchful?

A part of me feels like I can’t take this on; I can’t work on one more single thing with him.

(Things we are currently working on: screaming, swearing, keeping his seatbelt on in the car, screaming, saying please and thank you, using his fork at dinner and sleeping past 5:30 in the morning. Oh, and the screaming.)

But another part of me, a part that has more energy and isn’t tired of redirecting him and shushing him and asking him to use his words, feels as though I owe it to him.

If he’s overweight, it’s my fault. I’m the one who buys the food and cooks the food and sometimes, orders the sweet and sour chicken food to be delivered in a brown paper bag.

It’s my fault I let him play on the iPad because he’s too distraught for hide-n-seek.

It’s my fault I let him have ice cream after dinner every night because his world would fall right apart if he didn’t get his ice cream in the red bowl the minute he’s finished eating.

If one of my other four kids — and I won’t say normal or typical or whatever, I’ll just say other — started to gain weight, I’d make sure they moved a little more and maybe snacked a little less. Yet, like everything in Jack’s world, autism has complicated the matter.

For the most part, it’s a pretty simple equation: burn more calories than you consume and you will lose weight. Or, burn the same as you eat and you will maintain your weight.

But for my son, the calculation is a little different. You have to factor in the way autism demands he have the same dessert every night and makes him apprehensive of organized sports’ social subtleties.

Jack loves the ritual and tradition of food, such as pancakes on Saturdays and waffles on Thursdays, popcorn at the movies and popsicles at the local pool. He loves to bake large, elaborate cakes for everyone’s birthday. Oh, and let’s not forget his Oreo phase, when he begged to try every flavor Nabisco ever made.

He’s one of the few people I’ve ever met who wants to eat breakfast the second he opens his eyes. More often than not, I walk downstairs first thing in the morning and find him surrounded with his bowl of cereal and milk.

“Mom. I am happy today to find. The Honey Nut Cheerios.”

We had years when he refused anything unusual or new. As a toddler, he would only eat yogurt. Then as he got into kindergarten and elementary school, he wouldn’t touch the stuff. In fact, he wouldn’t eat anything with a wet texture, like applesauce or fruit.

Now he’s starting to try new things, like carrots dipped in ranch dressing and coconut shrimp. He’s once again eating yogurt — but only Chobani vanilla-flavored from a particular grocery store on the other side of town.

(Please don’t ask me why, because I have no idea how or why the vanilla Chobani yogurt from Hannaford’s is better than the vanilla Chobani yogurt from Market Basket.)

I know we’re lucky. I know many families struggle to get their spectrum kiddo to try a bite of anything at all. I’m grateful that the dinner table is no longer a battleground, but there’s also no moderation when it comes to which way Jack’s pendulum swings.

Over time, food has become highly important to him— planning it, shopping for it, preparing it and cooking it. His face lights up at the thought of a new recipe or a different kind of cookie.

It makes sense. Food lends order to his day: breakfast, lunch, dinner, dessert. It’s concrete. It’s soothing. It tastes good.

The other problem is Jack hates — and I mean hates — exercise of any kind, especially team sports.

We tried soccer. Disaster. We attempted baseball. Nightmare. We dipped our toes into the icy water of the swim team. Unsuccessful. So far, the only physical activity we’ve had luck with has been karate.

This spring, he also ran track for the Special Olympics team, but he refused to do it unless his brother, Joey, did it too. Even then, it took a fair amount of arguing in the car each week before he’d get on the field.

This isn’t to say he doesn’t move throughout the day. If self-stimulation, or autism’s charming side-effect defined as repetitive movement, were an Olympic sport, Jack would win a gold medal because a lot of his time is spent grunting and rocking and hopping around the room. We call it his zoomies. Apparently, zoomies do not burn off after-dinner bowls of ice cream.

And although he hated swimming on a team, whenever we go to the pool in town, he jumps off the diving board so many times it makes my head spin. High jumps, cannonballs and straight drops into the cold water.

I suppose I could create a schedule for him — a matrix with times and meals and healthy snacks and all that. I could make a rule that he has to ride his bike up and down the driveway for at least an hour, or play tag with his brothers and sister outside.

But I spend so much of my day — my life — begging my rigid boy to flex and bend that frankly, it feels crappy to start asking him to count calories and manage a fitness routine. He already has his own self-imposed rituals and rules, and I’m reluctant to add any more.

Our culture is not-so-neatly intersected into two somewhat polarizing categories; there’s the love-yourself-as-you-are category, and the health-obsessed category. When it comes to Jack, I feel as though I’m standing at the intersection.

See, I don’t care if Jack is overweight or pudgy or round. I don’t care about his higher-than-average body mass index or lower-than-average muscle tone.

I don’t care if he never steps foot on a soccer field or shoots a three-pointer on the basketball court the same way I don’t care if he marries a man or a woman or a purple muppet from “Sesame Street.”

This is what autism does for me. Having a son like Jack forces me to drag all the ugly, gross, embarrassing parts of my psyche into the light and examine them. It forces me to understand exactly where I stand at the crossroads of love and health, hope and fitness and food.

I want him to be happy. I want him to love and be loved, and I want him to have all the things he wants for himself.

I want him to enjoy the taste of cold, chocolatey ice cream on his tongue after dinner and the rush of water over his body after a jump from the diving board.

Mostly, I don’t want him to have to experience any more shame, insecurity or embarrassment than he already does.

“What is for me weird. They said weird for me.”

“Why am I a lonely boy.”

“Mom. I do not want it. I do not want this autism in me.”

But like the spectrum itself, there is no one solution to Jack’s higher-than-average body mass index. Whether it’s swearing or screaming or seat belts or ice cream, we can only take it a day at a time.

Today, we’ll remind that his body needs good food in order to be strong and healthy and fit.

Today, we’ll remind him that he always feels better when he rides his bike or swims in the pool or dances to the music.

Today, and every day, we’ll remind him he is loved.

And we’ll hope for the best.

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Follow this journey on Carrie Cariello’s blog.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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One Sentence Sums Up All I Need to Know About Being a Special Needs Dad

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He coached my Little League baseball team. He taught me how to drive. He coached my high school basketball team. He drove me off to my dorm for my freshman year of college.

When I got married, he was my best man in my wedding. When my son was born, he was waiting in the hospital room to see his new grandson. When I bought my first house, he went with me to meet with the realtor for the first time.

When I left a high paying corporate career and sold my dream house to start a special-needs ministry, he gave me his support. When I lay in a hospital bed fighting for my life a couple of months ago, he and my mom drove down to sit in my hospital room almost every day. While he and my mom stayed in our house with our son with special needs, they bought us a new fridge and a new outdoor grill.

Now he drives me every week on a 160-mile round trip journey to visit my medical team. And when we stop for lunch on the way home, he always buys.

When I finish a dialysis treatment, I always find him waiting for me in the lobby to drive me home. And every couple of weeks, knowing I’m on a special kidney diet, he grills me a dozen diet-approved, specially seasoned steak-burgers.

He stops by my office once a week just to check on me. The other day I thanked him once again for driving me around while my leg is in a cast, and he replied, “I have nothing else to do but take care of you.”

My dad has taken care of me for 48 years now.

He only needed 11 words to define our relationship as father and son for the past 48 years.

Eleven words to teach me all I needed to know about being a dad.

“I have nothing else to do but take care of you.”

I’ve often said I wasn’t ready to be the father of a child with special needs.

I have written about how I was not prepared, not equipped and did not know how to be the dad to a child with special needs.

But last week, I realized I’ve been wrong. I did know all I needed to know about being a dad to a son with special needs.

I knew what mattered most because he has demonstrated it to me.

I know how to embrace a son with unconditional love. I know how to be involved and engaged. I know my primary job is to simply take care of my son.

Quite simply, I know how to be there.

Love requires no words for expression.

If you want to determine the depth of a father’s strength, you must measure the depths of his unconditional love for his child. His strength isn’t determined by the size of his muscles but rather by the size of his heart for his family.

That’s why my dad is the strongest man I know.

Last night as my son Jon Alex and I sat quietly in the swing, I leaned over and whispered, “Never forget, I will love you forever. I will always take care of you.”

It’s the one lesson my dad taught me. And it’s the one thing that matters most.

Thanks for the lesson, Dad.

Follow this journey on Goodnight Superman.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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To the Feeding Tubes I Once Saw as an Enemy Instead of a Friend

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Dear Feeding Tubes,

The first time I saw you, I cried. You appeared to be hurting my baby, who was still under the influence of the anesthesia required to add you to our life. She screamed in pain and writhed each time the nurse or myself touched her. I remembered her twin sister was back in pre-op about to be seemingly forced to do the same thing. I hated you.

I remembered back to their newborn days when I thought breastfeeding would be my biggest challenge. How did we get here?  How did I go from nourishing my precious twins from my very own breast to adding a medical device to keep them alive? It felt like such a defeat.

When the nurse gently laid one of my very sore post-operative little girls in my arms in order to teach me how to use you, I wept. I didn’t want you to be a part of our lives. I hated you and what you represented. I had fought to keep you away for two whole years, and now, you had won.

A few weeks later, both of the girls became ill. Because of their disease, illness used to mean an almost automatic hospitalization for dehydration. That was before you entered into our lives, my dear feeding tubes. This time around, I was able to keep the girls hydrated and well throughout their entire illness. We made it because of you. In the weeks that followed, I noticed my girls were energized instead of depleted. I watched them climb up the growth charts, eager to play and more likely to rest well with full bellies. I saw their nails and hair begin to grow, along with their ever-developing little bodies. You did this, my dear feeding tubes. I believe you’re God’s gift to our family.

Morgan Cheek the mighty.2-001

This morning, I had a flashback to a mission trip we went on to a third-world country, a place where there may not be the resources to give individuals who need it the gift of a feeding tube. We don’t deserve you any more than the next, but we are so thankful for your presence in our life.

Feeding tubes, I’m sorry for seeing you as an enemy instead of a friend. I’m sorry for being ashamed and embarrassed of your existence. I no longer hate you; in fact, I have overwhelming love for you and how I believe God has used you in our daughters’ lives. Thank you for giving them that which I could not have given them myself.

I won’t be the last caregiver who feels this way about you. There will be others, who, like me, will have a hard time getting used to you. They’ll resent you and probably wish that you weren’t there. That’s OK, too. They’ll one day have a moment in which they see you as a blessing, but these things come with time.

Their moment might be the same as mine, or it might come in a fleeting moment in the middle of the night when they realize your presence is no longer as heart-wrenching as it used to be. So, feeding tubes, I will be a mouth piece today for all of us who’ve had a love/hate relationship with you for so long. Thank you. We may not tell you enough, but we don’t know where we’d be without you.

With love,

A forever grateful mom

Follow this journey on His Hands, His Feet, His Heart.

The Mighty is asking the following: Tell a story about a time someone helped you and/or your child when you needed it most. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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Model Who Lost Leg to Bacterial Infection Caused By Tampons Speaks Out

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When Lauren Wasser woke up in the hospital without her right leg in October of 2012, she thought her life was over. Now, the 27-year old model has returned to her career with a message to spread.

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Via Jennifer Rovero’s Instagram

Wasser was a successful model living in Los Angeles three years ago when she experienced flu-like symptoms that turned out to be toxic shock syndrome (TSS), a rare and life-threatening bacterial infection allegedly from the use of tampons, Today reported. Her organs began failing as she was rushed to the hospital. Doctors saved her life but could not save her right leg, which was amputated below the knee.

I literally was laying there, thinking my life was over. That I would never be accepted again, I could never model again — No one would look at me the same,” she told Today.

Wasser spent four months in the hospital following complications from TSS, which included gangrene and severe damage to her left foot in addition to the amputation of her right leg, People reported.

But now, Wasser has begun to accept who she is and the message she has to share. The 5’11” model has recently signed with modeling agency VISION Los Angeles and is suing the manufacturer of Kotex Natural Balance, the brand of tampon she used.

She now aspires to be a role model for people with disabilities and hopes to educate women about the potential risks of using tampons. Risks, Wasser says, she didn’t know about before using the feminine hygiene product.

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Via Jennifer Rovero’s Instagram

“Had I known toxic shock was real, and had I seen someone that had either lost limbs or spoke about it publicly, I would have never used tampons,” Wasser told People. “This is not just about me. It’s about the future, and it’s about these young girls that use tampons all the time. If people see the pain I’ve had to go through, maybe they’ll be more cautious.”

See more photos of Wasser below: 

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Via Jennifer Rovero’s Instagram
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Via Lauren Wasser’s Instagram
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Via Lauren Wasser’s Instagram
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Via Jennifer Rovero’s Instagram
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Via Jennifer Rovero’s Instagram

Get more on Wasser’s story in the video below:

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Why I Still Breastfeed My Medically Fragile Child

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A funny thing has been happening recently, and it’s cute and sweet and sad at the same time. My baby boy, Von, is becoming simply a boy. He’s getting taller and lankier (if that’s possible), and he’s becoming a lot more independent. It’s hard at times for me to watch the change because he’s the only child I will ever call my own. I want to cherish all these moments and savor every single hug and snuggle. I know in a few years the hugs and cuddles will not be as frequent, and that I will no longer be the top priority in his world. Slowly he’s been moving more and more to daddy. He wants to spend most of his time with daddy, and playing with mommy is just really not on the to-do list for my little man.

The one thing we’re still doing that I can’t believe we are is nursing. He’s still not weaned, and he doesn’t want to be weaned. For the most part doctors have been supportive, and it’s only been the dietician to suggest we wean him off the breast. I can’t believe how attached I am to those moments I get with him. He’s fully weaned off my milk in the morning. He now just gets some here and there through the day. I don’t offer it to him; he always asks me for it. He will be 3 in October and I keep saying we need to be done then. I don’t know why I keep saying that, but I feel a lot of pressure from society to be done. What if I’m not really ready to be done? What if he’s not ready to be done?

Von has been incredibly healthy since November 2014. Yes, he has life-threatening illnesses we treat daily, but he hasn’t had a virus or stomach bug in nine months. That’s a long time for this child who couldn’t go more than a week without something prior to November 2014. I continue to breastfeed in part because every milliliter of milk he gets has antibodies that help his body fight infection. It helps his body — which cannot fight infection on its own — have a little extra boost to keep him thriving.

Another benefit I didn’t realize is that breastfeeding my toddler actually reduces his tantrums. When Von is having a fit about something, upset or even scared, I can hold him closely and everything he was afraid or mad about is no longer a consideration. He has a happy and easy disposition, and we rarely deal with any bad behavior. Breast milk has hormones in it that make him feel good and also calm me. It’s kind of a win/win situation for us.

I had no idea breastfeeding can also help my longterm health. Research suggests extended breastfeeding (breastfeeding past the first year) might reduce the risk of ovarian cancer and breast cancer. It might also help my overall cardiac health. It’s really good for my mental health as well because every time I nurse him, my body releases oxytocin. Von’s endocrine doctor told me this is the “love” hormone. It makes me feel happy and super relaxed. It’s probably a reason Von has such a happy disposition, too.

Breast milk also contains fat in it that is essential for brain health and growth. This part is probably the number one reason I keep on nursing him. My son has an abnormal brain. His disease is so difficult to manage, and as a mother, I want to be able to provide him help. Giving him medication doesn’t feel natural to me. It doesn’t feel like mothering. He has to take these medications to survive, and I have no option but to give him them. However, I do have the ability to provide him milk containing fats and proteins that can help his brain grow and thrive.

Von will never be neurotypical, but I can rest my head at night knowing I’ve done my job as his mom by giving him the best chance at brain development I can.

Follow this journey on Von’s Super Hero Facebook page.

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