‘My lungs were running out of space. One by one, experts turned me away. I knew there was purpose in the pain.’: Osteogenesis Imperfecta warrior urges ‘life is worth fighting for’

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“My name is Michaela Davert. I am 22 years old. Having the opportunity to share my story with all of you here is an amazing honor! There’s a lot to my story so I will share it in the best way I know how. I hope you’ll continue to follow me along on my social media accounts as my story continues to unfold.

Courtesy of Michaela Davert

I was born with a physical disability called Osteogenesis Imperfecta (Type III). There are many different types of OI and I was born with Type III, which is the second most severe type. Osteogenesis Imperfecta is a condition caused by the body not producing enough collagen or the body produces enough collagen, but the quality is very poor. With Osteogenesis Imperfecta (Type III) – the type I have – my body produces enough collagen, but the quality of it is very poor.

Collagen is the most abundant protein within the human body so a defect in this causes many different health effects. The most common is this condition causes my bones to be extremely fragile. I have endured over 100 fractures throughout my life and 27 surgeries. Osteogenesis Imperfecta also affects my height to which I am only 2 feet, 7 inches tall. I also have a variety of other health conditions as a result of Osteogenesis Imperfecta.

Courtesy of Michaela Davert

Disability was not new to my family. Both of my parents have a disability and so does my twin brother, Austin. Myself, my mom, and my twin brother all have Osteogenesis Imperfecta (and no, we were not adopted) and my dad has a mild form of cerebral palsy. Both of my parents grew up in uplifting and positive families and have instilled the same in me. However, not everyone in the world has the same positive outlook on disability like myself and my family.

Before I was born, there were doctors who thought I shouldn’t have been born because they thought I would live a miserable life full of suffering and be a burden on society. Contrary to popular belief, I live an amazing, fulfilling life and am anything but a burden on society. I am forever grateful my parents chose life for my twin brother and me when so many others did not. I absolutely love the life I live, and my disability is my biggest blessing. I wouldn’t trade my life with anyone without a disability.

Courtesy of Michaela Davert

Growing up, I quickly learned how society truly views disability. I learned at a young age society views disability as a tragedy and just an incredible circumstance. This is far from the case. The truth is everyone in life has different circumstances and challenges. The only difference between my challenges and someone else’s is mine is just more visible. It doesn’t mean it is any worse or better than anyone else’s challenges. No matter what challenges one may face in life, their life is valuable. If quality of life is determined based on whether or not someone may be faced with challenges or hardships in their life, then none of us would be here because we all deal with something on a daily basis. For most people, their challenges just aren’t as visible as mine. That’s the only difference.

Courtesy of Michaela Davert

I have such a zest for life and have such an amazing life, not despite my disability, but because of it. I have been blessed to be raised by an amazing family who have always been there for me and provided me with such a great quality of life. I had an amazing childhood and continue to do great things into adulthood. I have excelled in school, graduated high school in 2016 with honors, a member of two national honor societies, and a member of DECA – an association for marketing students. Even though I did well in school, I struggled to make friends as it was not a welcoming environment. I always wanted some kind of community or outlet. I am currently a student at Davenport University working toward my BBA in Marketing with a concentration in Digital Marketing. At Davenport University, I am a member of the National Society of Leadership and Success and Sigma Beta Delta.

Courtesy of Michaela Davert

As a high schooler, after finishing up some homework one day I discovered the world of beauty and fashion videos on YouTube. I have always loved makeup and fashion and never thought to start a YouTube channel. I absolutely loved watching these videos and realized there were young women making a career from sharing their love for makeup, fashion, and their day-to-day life. While watching these videos and discovering more channels, I realized there were very few – if any at the time – beauty vloggers with a physical disability filming these types of videos. That’s when I made the decision to create my own YouTube channel to change the face of the beauty industry. This is when FunsizedStyle was born.

With over 39,000 subscribers now, I never imagined it to have grown into the community it has and I have been presented with the most amazing opportunities because of it. I create videos on my channel about makeup, fashion, lifestyle, and about my disability. Seeing myself represented in the beauty and fashion industry is so important to me. I want other young women and girls to know they’re beautiful just the way they are and there is no such thing as ‘a standard of beauty.’ And this has to include making sure young women like myself are not left on the sidelines in the beauty and fashion industry.

Courtesy of Michaela Davert

My channel has reached people from all over the world. I have had the amazing opportunity to share my story with so many outlets. The community and opportunities I have been given as a result of deciding to share my life online are such a gift. Along with changing the face of beauty through my YouTube channel, I also dive deep into the medical aspect of my life. As my audience became bigger and bigger on YouTube, viewers also expressed an interest in learning more about Osteogenesis Imperfecta and how it affects my life. I share in great detail about my disability and how it affects my life in hopes to change societal perspectives because having a disability is anything but a tragedy like most people think it is. The older I’ve gotten, the more and more interested I have become in healthcare and the medical side of my life overall.

Courtesy of Michaela Davert

Throughout my life, I have been blessed with amazing medical professionals, doctors, and nurses who have saved my life and those who have also drastically improved my life. I would not be here today without them and I am forever grateful for the healthcare heroes in my life who have kept me going. I’ve shared my journey of the surgeries I’ve had that affect my Osteogenesis Imperfecta and given me more independence, my journey with hearing loss and most recently my life-saving scoliosis surgery. Along with beauty and fashion, I have such a passion for educating others on my medical conditions and my experiences (both good and bad) in the healthcare industry in hopes to educate future and current healthcare professionals and be an advocate for other patients.

Courtesy of Michaela Davert

The past year, my social media platforms have shared pretty much every detail of my journey navigating the reality of the severe worsening of my scoliosis caused by having Osteogenesis Imperfecta (Type III). Scoliosis is the curvature of the spine. 6 to 9 million in the United States have scoliosis. For most people, they are not aware they even have it. For others, they know they have it, but it does not require any type of medical intervention and some may only have to wear a brace for some time. However, for some individuals – it drastically affects their quality of life and for me it was only a matter of time before my organs started to become compromised.

Courtesy of Michaela Davert

3 years ago, my scoliosis drastically started worsening. After an MRI back then – it was revealed to me this was no longer something I should ignore. This surprised me to the magnitude it had worsened because overall, I was in amazing health and did not present clinically and did not feel like I had difficulty breathing like most, if not all, scoliosis patients with the severity of my curve. It was a true miracle. The MRI revealed my lungs were running out of space to function at full capacity because of the severe curve in my spine. When I describe this moment, the first question that comes to people’s minds is, ‘Why did you wait so long to address this?’ The reality is during childhood, I was not medically strong enough to undergo a spinal fusion.

Courtesy of Michaela Davert

I also never dealt with back pain and it never affected my daily life. During childhood, I dealt with so many other medical challenges, it wasn’t the right time to put me through something with so many risks that outweighed the benefits at the time. However, 3 years ago was the start of having to make a life-altering medical decision. At such a young age, I never expected to ever have to be faced with making a decision like this. Any time the spinal cord is involved, there is a long list of risks whether one has Osteogenesis Imperfecta or not. However, due to the severity of the curve and my handful of respiratory conditions, my risks were exponentially higher than most individuals that will undergo a spinal fusion.

Courtesy of Michaela Davert

Even with the potentially life-altering risks, at this point there was no risk too big that would outweigh the benefits. Had I not went through with this, I was told I could have 10 years or less to live. There was concern had I decided to not go through with this surgery, I would one day lose the ability to breathe on my own requiring a tracheostomy and/or going into cardiac arrest. Once this reality was presented to me, I knew I had to go through with this. I have a joy and appreciation for life that is so big, and I wanted to do everything I could to ensure I would be on this Earth a long time in order to accomplish all my goals and aspirations.

Courtesy of Michaela Davert

I have had 25 surgeries before this and thankfully never dealt with any complications associated with them. However, this surgery was going to be unlike anything I had ever endured. The three biggest risks I was faced with were my bones not being strong enough to hold the hardware, being under anesthesia for nearly 10 hours (my longest surgery yet), and I could go into respiratory failure due to my associated conditions, which would require a tracheostomy. And due to the severity of my curve, I was also at greater risk of becoming paralyzed.

Knowing my situation and having made a life-saving medical decision, I wanted to seek the advice and opinion of multiple Osteogenesis Imperfecta and severe scoliosis experts in and out of my home state of Michigan in order to make the best decisions going into the most dangerous surgery of my life. One by one, some of the top OI and severe scoliosis experts turned me away, saying I shouldn’t do it, my risks were too big, it wasn’t worth it, and I should ‘just live with what I have left.’ After so much prayer, I still felt in my heart this was something I needed to do. There had to be someone out there who could help me.

Courtesy of Michaela Davert

I was blessed with Orthopedic Surgeon Dr. Michelle Caird and Neurosurgeon Dr. Hugh Garton at C.S Mott Children’s Hospital in Ann Arbor, MI and between the two of them, they agreed this is something we needed to take on. They value my life. It didn’t matter that the risks were big. They see the value in my life and wanted to do anything and everything they could possibly do to give me a longer life and make sure I’m here for the long haul.

After years of planning, decision-making and preparation, September 14, 2020 I went into surgery to be placed into halo traction, which is a metal ring around my head with nine screws inserted into my skull. The halo ring attached to a pulley system attached to my wheelchair where weight pulled up on my spine over the course of 3 months to slowly stretch it out to give a better outcome during my spinal fusion surgery.

Courtesy of Michaela Davert

It was the hardest thing I had ever done. But I knew there was going to be purpose in this pain and life is worth fighting for. That is what kept me going during the longest 3 months of my life. On December 23, 2020, I had completed my time in halo traction and the day my healthcare heroes and I were all waiting for was here. They were going to do what was deemed impossible that day by so many doctors. And yet they were in this with confidence. With so much prayer, hope and fear, on December 23, 2020, I went into the operating room about to take the biggest risk of my life. I knew God was with me and He gave me the best medical team in the world for this endeavor and that gave me so much peace.

10 hours after 7:30 a.m., I woke up knowing I would still be intubated and they were going to attempt to extubate in the morning. I felt to see if a trach was there. No trach was there. Then I realized I had full feeling throughout my body. I was not paralyzed. I realized a miracle had happened. God gave me the miracle I had prayed so long for. Before surgery, I was told in advance I would most likely need at least one blood transfusion. While still intubated, I wrote on the whiteboard my nurses gave me to communicate with, asking them if I needed a blood transfusion and if so, how many. They responded no blood transfusion was needed. I couldn’t believe it. So many miracles happened that day and in the midst of unbearable pain, I was filled with so much joy. I was given the gift of life.

Courtesy of Michaela Davert
Courtesy of Michaela Davert

The morning was going to be the real test. They assumed I would need to be intubated for at least 2 days but did so well throughout the night, they were going to attempt to remove the ventilator in the morning. That morning, I was successfully extubated. It was in that moment I knew I was given another miracle in my life and overcame the impossible. I am forever grateful God gave me a miracle and the best medical team in the world that not only values my life, but also saved my life. It’s been a long and difficult recovery, but I am improving every day and getting one day closer to full recovery.

Courtesy of Michaela Davert

Because of this journey, I will be able to be here to accomplish all my goals and aspirations, continue to change the face of the beauty and fashion industry, and get back to doing everything I love such as traveling and creating content for my social platforms. I hope you will continue to follow my social media platforms to watch my story continue to unfold as I accomplish more each day. And don’t forget, life is worth fighting for!”

Courtesy of Michaela Davert

This story was submitted to Love What Matters by Michaela Davert from Michigan. You can follow their journey on Instagram, YouTube, and her store. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching stories about Osteogenesis Imperfecta: 

‘I was coughing so much I fractured my rib. ‘I will fight for myself and my baby.’ I gave my life to bringing a baby into the world.’: Woman with Osteogenesis Imperfecta gives birth to healthy baby, ‘Never give up on your dreams’

‘Legs are bowed. All bones, bowed. Extremely short.’ I felt my heart sink. ‘I don’t see the point in continuing. You can end it now, quickly.’: Family cherishes 29 hours with Osteogenesis Imperfecta warrior

‘They said I mishandled the baby. All the blame came to me. She was met with 18 fractures and a brain hemorrhage.’: Mom of child with Osteogenesis imperfecta says ‘I won’t give up’

‘We were given a pamphlet. Everything said ‘lethal’. My boy had other plans.’: Baby with Osteogenesis Imperfecta ‘makes his own rules,’ defies all medical odds

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