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    Community Voices

    Work life balance, when your work is your life.

    <p>Work life balance, when your work is your life.</p>
    Community Voices

    Hi, yes I have every hashtag. Yes, I do get extremely out of breath from bending over.. yes I do need a wheelchair for bigger places due to lack of air as well as other physical problems.
    However, I just got diagnosed with bronchomalacia, laryngomalacia, and aspiration today. I’m 21 years old, yet I’m getting diagnosed with things commonly found in children. Are there any other adults out there with these issues? If so, what’s your diet like and how did you help your lungs breath better if you were able to?

    1 person is talking about this
    Jennifer Carfora

    Receiving a Rare Diagnosis for Your Child and Grieving

    Our journey with Jaxson has been anything but easy. My firstborn son’s journey was simple – an easy pregnancy with zero pregnancy-related symptoms and no complications, thankfully hitting every milestone. Our youngest son’s journey started similar to his big brother’s, but at 19 weeks, things started to shift. When I walked out of the ultrasound tech’s office, I knew things would be completely different. We were told to return back the following week for a “routine” check because they were not able to see his kidney’s and umbilical cord in its entirety. OK, this seemed like something that could happen. It seemed plausible. I mean, you hear all the time about how some doctors guess the wrong gender. My sister-in-law even thought she was having a boy her entire pregnancy. So, not being able to see his kidneys and umbilical cord seemed like no big deal, until I got a call from my midwife. She explained that we would be followed by a perinatal specialist off post along with receiving care at the Naval Hospital. Apparently, he had been diagnosed with a two-vessel cord and with that came complications. Week after week, and month after month I had non-stress tests, ultrasounds to measure his blood and oxygen flow, and amniotic fluid levels. We were induced at 39 weeks because he was measuring four weeks behind; they estimated that he would be may be five pounds. They explained why that they thought he would thrive best outside of the womb. If only it was that simple. Our first few months were even more difficult; he was diagnosed with the inability to suck and swallow, failure to thrive, he had reflux and GERD, microcephaly, and he was even misdiagnosed with laryngomalacia. That’s what happens with our children who have rare genetic disorders: a lot of misdiagnoses. Thankfully our pediatrician was awesome and was able to think outside of the box. He put in an order for genetic testing because of everything that was going on with our little man. And in April 2018, we received our diagnosis of Dyrk1a syndrome. I can remember what I was doing that day like it was yesterday. I had taken our eldest to VPK on the Naval Air Station, and decided to have a cup of coffee with my friend that day. As we were enjoying ourselves and our coffee, I received a call from the team of genetics in Birmingham, Alabama. “We have an answer,” she said. I honestly didn’t think we would receive an answer because the micro array came back negative. I was so relieved; we finally had an answer as to why our little guy was so late at meeting milestones, why he still hadn’t said his first word, and why we had such a difficult first year of life. The doctor explained that his symptoms were due to Dyrk1a syndrome. “This syndrome wasn’t even on our radar, we are shocked.” I had no idea what Dyrk1a syndrome was and what it meant forus; all I could think was how happy I was that we finally had an answer! She asked if I had a pen and paper ready so she could recite the symptoms and features of Dyrk1a syndrome—all of which were found on Google. As I was listening to what she was telling me, all of the dots started to connect. Every little feature she gave me, our little guy had. Everything started to make sense. But then she started to tell me that children who have Dyrk1a syndrome have intellectual disabilities, developmental disabilities, skeletal abnormalities, epilepsy and seizures as well. My relief started to fade into grief. I started to grieve for my baby. Unless you have a child with a disability, you might not understand why I grieved. I grieved for the child I thought he would be. I grieved for the future and what it meant for him. I grieved for the pain and fear he felt experiencing his firstseizure. I grieved for a while. I grieved every time I had to explain to family, to friends, to doctors, to strangers what Dyrk1a syndrome was and how it affects him. As we grow closer to his third birthday, I’ve found myself grieving less. Don’t get me wrong, I still worry about him and his future and what will happen to him when we’re gone. It scares me to death. But we’ve found a new family, our Dyrk1a syndrome family. We’ve found people who understand our frustrations, our tears and our fears. They’ve truly helped me cope. My one advice to parents receiving a rare disease diagnosis is: It is OK to grieve. It’s OK to cry. It’s OK to scream. It is a perfectly normal reaction and you don’t let anyone tell you otherwise. Once you’re ready, reach out to other families with that rare disease. They will be the family you didn’t know you needed.

    Kim Marchan

    Why Recognizing World Airway Disorders Day Is Important to Me

    I celebrated World Airway Disorders Day on July 10. I can’t help but think back to where I was two years ago, when my first child was born with the airway disorder, laryngomalacia. As he slept next to me, I remember hearing his labored breathing and out-of-control reflux. Since March 30, 2016, I had taken him to the pediatrician countless times but I was always told, “He’s a baby, babies cry. He will grow out of his noisy breathing.” Back then I had no idea what an airway disorder was. Unfortunately, due to the lack of awareness and urgency from my original medical team, my son went undiagnosed with severe laryngomalacia for 10 months which caused prolonged severe obstructive sleep apnea and a dangerously low baseline oxygen level. He is now a happy 27- month-old boy and has had two life-saving airway surgeries thanks to an amazing ENT who was armed with the knowledge to help him. I still can’t help but think about what would have happened if my pediatrician was more aware of the complications and severity that come along with airway disorders, specifically laryngomalacia and tracheomalacia. Would my son have walked before 17-months-old? Would he have the low muscle tone that he has today? Would I still carry with me the PTSD from the first year of his life? Just three months ago my daughter was also diagnosed with laryngomalacia, but this time I knew what to do. I acted quickly and assembled our medical team and we have a plan in place to ensure she continues to thrive. My hope today is that families that hear stridor, or noisy breathing, in their newborns, have little ones that choke while feeding or whose babies experience chest and neck retractions are taken seriously by their doctors. I hope that families are referred to ENTs to be properly followed and most of all that they don’t have to wait a year for a diagnosis. For more resources on laryngomalacia, visit

    To the Mother Whose Baby Has Just Been Diagnosed With Laryngomalacia

    So your baby was just diagnosed with laryngomalacia (LM). Can you pronounce it? Don’t worry, I couldn’t either. In fact, it took me three months to learn the correct pronunciation and spelling. In time you will be able to spell it backwards. You will know more about this defect than you ever thought possible. You will become someone we like to call a LM Supermom. You will wear this title with honor. It will be a source of strength in the darkest of moments — a reminder that you can and will get through this. Having a baby with LM, tracheomalacia (TM) or bronchomalacia (BM) may be one of the hardest journeys you will ever have to walk. And that’s OK. Don’t be angry at this journey; it’s here to teach you. Let it teach you. Allow it to provide you with a whole new view on life — a more simple, wholehearted and grateful for every breath kind of view. Don’t spend your journey full of anger. Instead, spend your time focusing on the walk. Soak in the sunlight wherever possible and remain graceful when your heart is full of worry and always be kind. Your journey is hard, but we know that someone else’s journey may be even harder. Friends will leave and friends will come. Friends will leave because it’s their time to leave, not because it’s their intent to hurt you. Take a deep breath and let them go as beautifully as you let them in. New friends will arrive with hearts wide open. They will know how important a hug and a hot, home-cooked meal is. Hug them back — tightly. Be thankful for the future with them. Your partner is scared. In fact, he is very scared. That anger he is showing? That’s him letting you know he’s feeling all the same emotions you’re feeling. It kills him to see you hurt like this, and there are no words to describe the pain he feels seeing his baby struggle like this. Let him know how you feel and what you need. He doesn’t know what to do. He never thought he would have a baby with an airway defect. You both can survive this, but if he chooses to disconnect and walk away, let him. Holding onto a relationship when it’s time for it to end will only fill you of anger, bitterness and resentment. Your baby needs all of you right now. You will be OK. You will recover. You will grieve. Grief comes in all shapes and sizes, and it always seems to hit you when you standing in line at the grocery store. Allow yourself to grieve for the healthy baby you weren’t given. This is a normal process. Don’t let anyone tell you any different. Listen to your instinct. You know your baby better than any monitor or medical test. Let your voice be heard, and if a doctor speaks over you, find a new doctor. Get to the best hospital. Bills can be paid later; your child needs to breathe now. Walk this journey with grace. There are going to be some high mountains to climb, and the rain will pour. Choose to let the good strengthen you while letting the bad empower you. Every step you take on this journey will leave footprints that your pint-sized powerhouse will follow. Show your child there is always a reason to have a hope. Anger doesn’t make life-changing decisions, and the good always follows the bad. You are an LM Supermom for a reason. Stay strong and breathe easy. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to 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.

    Erin Bravo

    Laryngomalacia Won't Take Our Daughter's Laughter

    Dear Laryngomalacia, You have taken so much from my daughter, from me, and from my family. After a routine pregnancy, I delivered Louisa on August 31, 2014. It was an amazing experience to place her on my chest after she was born. It was beautiful. But you stepped in and stole the moment. You made her first moments on this earth a struggle to survive. She was robbed of air and without the ability to cry out. I watched as doctors and nurses worked against you to help my daughter breathe. They placed her on a ventilator and transported her to another hospital. She was placed on a cooling protocol to minimize damage from her lack of oxygen. For three days, her temperature was lowered to slow down metabolic functions. In those first few hours and days, she wasn’t with her family, where she should have been. I was told it would be several weeks until I could take my baby girl home – they didn’t know what was wrong with her. We heard scary words in those first days: oxygen deprivation, seizures, brain damage and pulmonary hypertension. They didn’t know about you yet, laryngomalacia. At 10 days old, she was scoped and they found you. Doctors operated on her that day in the hopes of removing you. While my daughter improved, it was clear that you were not going to leave that easily. Eating was nearly impossible for her. I didn’t have a chance to breastfeed. Instead, she had a tube inserted down her throat to provide nutrition. Slowly, she grew stronger and was able to drink from a bottle. She had her breathing tube removed. She weaned from the oxygen. One by one, the wires were removed from her until one day, there were none. After 23 days in the hospital, we took her home. We took her home free of seizures, brain damage and heart defects. You are still there — in her slow weight gain, her labored breathing, her reflux, her cry. You have presented her with challenges that no child should have to overcome. But you will take no more. You cannot take her laughter. You cannot take her smile.  You cannot take her joy. You cannot take our happiness. The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to help celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.

    Kathleen Clark

    5 Reasons I'm Grateful for My Son's Laryngomalacia

    My sweet 7-month-old son, Fynn Tucker, is in the fight for his life. It’s a fight he has been fighting since birth, something we were told was just raspy breathing caused from still having a little fluid in his lungs because he was born via c-section. But I knew in my heart my son was battling the same battle his older brother battled years before. Seven months later, countless tests, countless sedations and a 5-day hospital visit later, we’re still fighting. He was finally diagnosed with laryngomalacia in January 2015. He was also diagnosed with obstructive apnea and severe reflux in October 2014 and asthma in December 2014. I have so many negative things I could say. I could express my hate in watching my innocent child struggle to breathe or quit breathing all together. I could write about all the negative things laryngomalacia has done to my family. But I would much rather turn this part of my life, of my son’s life, into a positive and talk about all the good things it has done… 1. It has showed me what a blessing life is. Life is so fragile that I won’t waste another second. I will cherish ever piece of my children, and for that I am grateful. 2. It has made my husband and me stronger. Watching your child struggle to live is an eye-opener and has taught my husband and me to work together… so for that I am grateful. 3. My son isn’t just a normal baby… he’s a fighter. He’s fought so hard in his first year of life that he is ready to fight anything, and for that I am grateful. 4. It has showed me who my true friends are… the friends who are there whether you have the time for them or not, the friends who visit the hospital when you are there for five days watching your child struggle to breathe… those are the friends I will keep in my life, and for that I am grateful. 5. I have met some amazing people among this journey, some people going through the same battle and some going through a different one. But regardless of their battles, they always keep a smile and love life and because of them, I have learned to put my faith in the Lord and found peace with God. I believe he did it so I could be his voice and fight for him, beside him, and I have been blessed to love him… and for that I am grateful. The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.

    Samantha Secor

    14 Different Ways I Can Define My Son's Breathing Disorder

    1. Laryngomalacia — a diagnosis I found on my own while arguing with doctors that my sweet 7-day-old son shouldn’t be breathing like he was . 2. Laryngomalacia — a diagnosis my son was given at just 14-days-old. We were told this was “harmless,” and “He will outgrow it.” 3. Laryngomalacia — a diagnosis that caused by sweet 21-day-old baby boy to have surgery that led to further complications. 4. Laryngomalacia — a diagnosis that caused him to be put on two monitors because he stops breathing every single night and can’t maintain his oxygen levels. 5. Laryngomalacia — a diagnosis that caused our 6-year-old to watch her baby brother turn blue, stop breathing and spend countless days in the hospital. 6. Laryngomalacia — a diagnosis that has led to us watching or son 24/7. We are sleep deprived, stressed and angry. 7. Laryngomalacia — a diagnosis that caused our son to go through more tests, needles, sedation, pain and difficulty breathing than any child should ever have to endure. 8. Laryngomalacia — a diagnosis that led us to tracheomalacia, innominate artery compression syndrome, aortic stenosis, severe reflux, tachypnea, obstructive apnea, cyanosis and asthma. 9. Laryngomalacia — A diagnosis that causes us to spend much of our son’s first year in different specialist offices while they try to figure him out. 10. Laryngomalacia — A diagnosis that causes my husband and I to join together and support each other through the toughest of times. 11. Laryngomalacia — A diagnosis that made me realize I am a very good mom and, I believe, the mom God chose for Elijah. 12. Laryngomalacia — A diagnosis that has taught us not to take anything for granted. Every single breath that we breathe is a precious gift. 13. Laryngomalacia — A diagnosis that does not define our son or hold him back. I believe that he has shown the world that  he is a great fighter because of the will and power of God inside him. 14. Laryngomalacia — A diagnosis we know we will be fighting for some time, but we are not afraid. Because we have a superhero on our hands. The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

    Erin Perry

    A Message for My Son's Unwelcome Visitor

    Laryngomalacia, You and I have become well-acquainted over the last two years. I certainly would never have chosen to know you — it was a forced meeting. You’re not my friend. We’ve grown together, but I will never like you for what you’ve done. You’re the boisterous visitor who had too much to drink and didn’t know when to stop. We spent the first eight months unaware of each other. I watched my son struggle to gain weight. He didn’t weigh a pound over his birth weight until he was 3 months old. I watched his lips turn blue and listened to him gasp for air. We struggled for months to figure out why. I was told his erratic breathing was normal. Little did I know you were in his throat, an unwelcome growth causing all of his symptoms: reflux, blue spells, sleep apnea and aspiration, to name a few. I fought my son daily to get him to eat. He was so hungry but just wouldn’t eat. I didn’t understand why. I did not know he couldn’t eat because you wouldn’t let him. You starved my son. You quickly took away whatever food he did manage to consume by making him breath so hard. And then you just wouldn’t let him eat. We were formally introduced after a camera was shoved down my son’s nose and into his airway while I held his squirming body. I watched and listened as the doctor said, “Yes, there it is.” And there you were. I looked at your ugly self and wished I could magically rip you out of my son, putting an end to all the pain, tests and medical procedures. You, however, had other plans. First, the doctors needed to do a sleep study. I’ve never seen so many wires taped to my son, from his head to his torso and down to his little toes. A nasal cannula became a fight I never thought I’d have with such a little child. You created a sleepless night for me as I watched my son cry and scream before finally giving up and passing out. He whimpered that whole night. You made him whimper — I’d never heard that before. I hope to never hear it again. We finally had answers. We knew it was you who caused my son to fail to thrive for his first year of life. Funny thing — I used to look into my son’s eyes every day, his warm blue eyes, and cry at the sound of those words: “failure to thrive.” I wondered what that meant. You, Laryngomalacia, made me feel like I was failing my son. Surgery was scheduled. I handed my baby boy off to the doctors so they could remove his overly large adenoids, believing and hoping that would be the fix. Seeing my son come out of an anesthesia-induced stupor is not how I imagined celebrating his first birthday. It was the saddest moment. You still would not leave. You would not stop. You continued to harass my son and my family. The sleepless nights, the worry, blue spells, gagging and aspirating did not go away. You were not going away; you were not getting better. Another sleep study. More wires, louder screaming, more tears and another horrible night. He still had severe sleep apnea. It was heartbreaking. Back to surgery. This time, though, you would lose. Goodbye. Goodbye to the worry, the struggles and the challenges you created. You failed us in so many ways — you sabotaged my breastfeeding relationship with my son, you sabotaged my son’s fragile body and you sabotaged our finances. But in the end, you lost. You lost. We part ways now. It’s time to say goodbye. I will never forget you and what you have done. You are gone, but my son is not. He is still here. He has grown so much and gotten so much stronger. So long,Erin, mother to a special baby boy. This post originally appeared on Contradiction of Me. The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

    Amanda Shook

    To the Conditions That Force Me to Do What No Mother Should Have to Do

    Dear Laryngomalacia/Tracheomalacia, It’s been 18 months since you made your awful appearance in our lives. It seems odd to me that 18 months ago I had no idea who or what you were, let alone how to spell your name. I now know how to spell it forwards and backwards and know you inside and out. I had no idea 18 months ago how you were going to turn my world upside down. How much you were going to affect my daughter. How you were going to change me as a mother. I had no idea how to care for a child who had LM/TM. I had no idea how to cope with the bomb that doctors just dropped on me. You make me so completely and utterly angry. I don’t think I’ve every felt so angry or had so much hatred until I learned about what you would do to my daughter. You took away my newborn’s breath; you made her turn blue and go limp on more than one occasion. I had to hold my baby down while a doctor took a scope and stuck down her nose while she screamed, gasped for air and looked to me for help. When he was done, the doctor told me, “Your daughter has LM/TM.” I can’t describe the anger I felt from then on. You’ve upset me. You’ve made me wish away my daughter’s first 18 months of life in hopes of something better for her. I was supposed to be enjoying her every minute while on maternity leave; instead I was constantly in hospitals, by her bedside, wishing we never met you. You’ve made my heart ache. You’ve made me cry until there were no more tears left. You’ve betrayed me. LM/TM is supposed to only be noisy breathing; it’s only supposed to be an annoyance for parents, just a sound. You were supposed to clear up in the first three months of her life. We’ve been watching and waiting for you to leave; you were supposed to be gone by now. An 18-month-old baby should have never had as many problems as she’s had so far, taken as many medications as she’s taken, been on a first-name basis with the pediatric staff at the hospital. You’ve made me do things I never thought I’d have to. I never thought I’d have to hear an alarm go off in the middle of the night telling me my baby has not taken a breath in 20 seconds. I never thought I’d ever see my infant lying blue and lifeless. No mother should ever have to give her child CPR, yet you’ve made me give my infant CPR four times. Every night you make me worry she’s going to stop breathing. I hate you for making me feel like that. I will never be the same because of that. A mother should never have to feel that way. A mother should never have to pray every night that her baby wakes up in the morning. You’ve made me crumble into a million pieces any time we get bad news from the doctor. Everyone thinks I’m great at holding it together, but really I’m just great at pretending. All of this is your fault. I’ve come to the realization that I can either resent and hate you forever or I can accept you and try to move on. For now, all we can do is try to keep going, give her medication, go to therapy and hope that you leave my daughter alone soon. Please leave us alone soon, Olivia’s Mom The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .