By Gracie Van Brunt
Hi! My name is Gracie Van Brunt, I am 25 years old and I have a rare disease.
At the age of 2, I was diagnosed with a rare, chronic and life-threatening disease called Shwachman-Diamond syndrome (SDS). It is a genetic disease that affects only a small handful of individuals throughout the world. Current studies estimate that there are only 5,000 diagnosed cases. It mainly affects your pancreas, skeleton and bone-marrow. It was typically known as a pediatric disease, as most cases are diagnosed when the patient is a child, but with advances in awareness, diagnosis and treatments, many patients are living well and living long lives. The life-threatening aspect of SDS is the bone-marrow. Because a patient with SDS does not naturally develop enough blood cells to fight off infection and properly sustain the body, it is common that SDS can turn into bone marrow failure, myelodysplastic syndrome, and ultimately can progress to acute myeloid leukemia.
For the first 6 years of my life, I was going to the hospital every 3-4 months for 3-5 days at a time to receive treatment. Because my immune system was so weak due to my bone-marrow not being able to generate enough blood cells to fight off infection and my digestive tract was not properly functioning due to a lack of natural pancreatic enzymes, I would go to the hospital for something as simple as a bug bite or a papercut that would turn into cellulitis or even sepsis.
Because of this it was hard for me to make friends, make decisions for myself, or lead a normal life. Throughout my childhood, I felt like I didn’t have a say in what I could do with my body or my life. As a child, it was hard for me to recognize that these random strangers touching me and poking me with needles in the hospital were actually there to help me. It felt like I didn’t have a voice at all…until I discovered that I could sing and write music.
I have always grown up in a very musical family. My mom is a singer, my dad is a singer and guitar player, my brother plays guitar and my sister can sing! I started singing with my dad’s band, singing in the shower, singing in the car, and basically singing wherever and whenever I could.
Eventually, I started performing in my local talent shows, venues, and for special occasions. I had finally found my voice and it felt so good. People were actually listening to me. People were actually focusing their attention on something other than my disease.
In 2007, when I was 12, I was granted a Make-A-Wish to meet my singing idol, Kelly Clarkson (Kelly Meets a Fan!)! Around that time Kelly had split from her previous record label and started writing her own songs. I wanted to be just like Kelly and was enthralled that I could take my emotions and turn them into something relatable and productive. The summer that I returned from my trip, I wrote journals and journals of songs. I would write a song every single day, sometimes multiple songs a day. I had finally found an outlet that allowed me a voice to share my story and who I am.
I released an EP when I was 16, created a music video at 18, (“Thomas’s Song (Don’t Ever Change) – Official Music Video”) attended Berklee College of Music in Boston (one of the top music schools in the world), self-produced my own album at the age of 21, and moved to Los Angeles to pursue a songwriting career. Since then I have released music with various labels (“Left for Dead” – Gracie Van Brunt – Official Music Video).
In June 2017 at the age of 22, I was hit hard with the Epstein-Barr virus. I was hospitalized for two weeks and had to be heavily monitored for the next year. Typically, I would get a bone-marrow biopsy (a procedure to check the health of your bone-marrow) every two years, but because of how impacted I was by this virus, I needed to get one every six months. I also needed to get my blood taken once a month as opposed to once every three months. After monitoring my health for quite some time, my doctors started to notice a negative change in my cells and in December of 2018, my doctor recommended a bone-marrow transplant.
I was in shock and ultimately devastated by this news. Never in my life did I think I would need a bone-marrow transplant, but alas, there I was. Ironically, the first thing I did when I got home from this appointment was listen to one of my own songs to help calm me down. I am excited to announce that this song will be coming out in the next couple of months along with some other music that I will be talking about later in this article!
At the time of that appointment in 2018, my boyfriend Louis and I were living in Los Angeles. Over the course of the next few months in the beginning of 2019, we had to find the right doctor to do my transplant, a date for the transplant, find a home for our two cats, give up our apartment, and drive across the country to Boston, MA where I could be treated at the Dana Farber Cancer Institute (Journey to Transplant: Preparing for My Bone-Marrow Transplant). I have been very blessed because early on in my treatment, we discovered that not only was my brother a 100% HLA Bone marrow match but my sister was as well!
So on June 14th, 2019, I received my bone marrow transplant with my brother being the donor (Journey to Transplant: In The Hospital // The Big Day!).
Since then, I have been in medically quarantined recovery inside of my childhood home where my boyfriend and I are living with my parents. This means that I am not allowed to enter public spaces, no one is allowed inside of my house, and I am not allowed inside of anyone else’s house. Although my recovery has been one of the hardest experiences of my life with a lot of pain and exhaustion, blood transfusions, stem cell transfusions, and a lot of doctor’s appointments, it has been so rewarding and something that has allowed me a lot of self-reflection and growth. For me, this also means a lot of time to work on my music and other projects. I have never been one to sit still for very long and I like being busy and productive. I got to work on my album. Luckily, Louis is a very talented music producer who also went to Berklee College of Music, so he and I have been working on my album together. I am so grateful to him in so many ways. During my recovery, I have been able to continue releasing music and have had three releases so far! I have also been able to continue doing paid work as a songwriter and vocalist (Siren – Kiba & Mortals ft. Gracie Van Brunt).
In just a few months, I will be releasing two EPs titled “Day Zero: In the Dark” and “Day Zero: In the Light” with my first single titled “RunRunRun.” These are songs that I have written at my lowest and highest points in dealing with my disease, transplant, and recovery. I genuinely hope that these songs can help anyone else going through a similar experience to me. I hope to connect with those who have a medical condition or rare disease who either haven’t found their voices yet or don’t feel comfortable with their voices yet. I want these songs to heal people the way they healed me and I truly hope they do.
I had to learn early on in life that just because I have this rare disease doesn’t mean it needs to define me. My disease has taught me to persevere even when times are rough. It has taught me empathy. It has taught me to listen to my body and take care of myself. And most importantly it has taught me to NEVER EVER let something stop you from being the best version of yourself and working hard for the life that you envision.
My mission in life in advocating for SDS and any other rare disease or medical condition is to let people know that they are not alone and to remind them to keep striving for the best for themselves. You got this ;).