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Carina Imbrogno

My name is Carina Imbrogno and I would like to share and publish my miracle story with others to help inspire them and give them hope it’s one way of me paying it forward. 

 

My name is Carina Imbrogno and I was born in 1974 in Buenos Aires, Argentina to Italian immigrants. I was born with a rare genetic disorder called Ehlers-Danlos Syndrome kyphoscoliosis type, but it was not diagnosed until 2015. This illness caused me to have severe scoliosis kyphosis since the age of two. I am the youngest of eight children.  We were four girls and four boys.  My oldest sister died from Leukemia as a toddler.  I grew up with a very difficult father.  I realized years later that my father was always ashamed of me because of the way I looked. Growing up I was also bullied and teased by other kids due to my very prominent rib hump.  Having many surgeries and wearing orthopedic braces wasn’t easy!  

 

I began wearing orthopedic braces and body casts from the age 2 to the age of 11 and then again as an adult.  I had my first open back surgery at 10 years old.  My spine was collapsing so fast I was having trouble breathing.  The doctors explained to us that I needed emergency open back surgery because my ribs were collapsing on my lungs making it difficult to breathe.  I had a curve of 89 degrees and another curve of 56 degrees. Doctors explained to us that I have a deadly type of kyphoscoliosis and without surgery I would die.  I had surgery and had a rod put in to stop my spine from curving any further. 

 

Unfortunately, I had complications.  A few days after being sent home from the hospital I developed a very high fever.  I went to see the doctor and he discovered I had a massive infection from the surgery. I almost died from this infection which left me hospitalized for three months.  Fortunately, the infection finally healed but over time the rod that was put in as a child began giving me problems.  By the time I was 18 the rod had somehow moved out of place and doctors think it was causing my migraine headaches.  I finally had to go for another surgery to remove part of the rod.  My migraine headaches finally went away. However, I struggled with my severe and painful rib hump and was always fearful that I would never find anyone because of the way I looked.

 

In 1996 I was accepted to go to school at the Fashion Institute of Technology in New York City to study textile design.  I graduated in 2000 with a grade point average of 3.8.  My art teacher Susan Rietman who I am very close to always supported me in my work and motivated me to believe in myself.  Shortly after I graduated, I met someone and got married but, sadly found myself in an abusive relationship.  After I separated from my abusive husband I was diagnosed with endometriosis. I had five abdominal surgeries for this illness which resulted in more complications.  It was a very painful illness to endure.   During this time, I had a dream of God telling me that I would go through many difficulties, but I wouldn’t die, and He would always be with me. In late 2004 I had a surgery to correct my prominent rib hump, but it was unsuccessful and caused my spine to collapse at a fast rate.  I have a very rare and aggressive type of kyphoscoliosis. The doctors told me they couldn’t help and that I would end up in a wheelchair and then die. I remained bedridden and highly medicated to stay alive.  By 2006 I had a side curve of 115 degrees and a concave curve of 120 degrees.  I felt hopeless and very scared. No doctor would touch me because my condition was so severe and complex, and I only had State insurance which doesn’t cover a $500,000 plus surgery.

 

One night I had a dream of a white light filled Being who put His hand through me and straighten my spine.  Afterwards in my dream I stood up and walked away.  Two weeks later I found the doctor who saved my life. My oldest sister Ana took me to Texas where this doctor was able to correct my collapsed spine and rib hump. I have two rods and 26 screws holding my spine and had nine ribs cut and reduced in size to minimize the rib hump.  I grew five inches from the surgery.  This was a miracle for me.  The success of my operation was called a miracle by Dr. Shelekov and his entire team who performed the operation. I am forever grateful for what he did for me. Unfortunately, he passed away two years later.

After the spinal surgery I was doing so well that I was able to take a trip to Argentina to see my parents.  I especially wanted to see my mother who hadn’t believed I was well.  Unfortunately, a couple of years after my surgery I started to suffer from severe depression and anxiety.   I had never felt this way before.  The doctors eventually discovered I had ovarian failure and was going into early menopause. There were no medications I could tolerate due to the many side effects and sensitivities I have.  At this point I was 33 years old.  I was living in my brother’s basement at this time and my unmedicated depression and anxiety got so bad that I spent four years feeling hopeless and bed ridden. The one person who gave me hope was Father Frank who visited me.   In 2013 I went to the Mayo Clinic in Minnesota where they discovered I had pelvic floor muscle dysfunction which added to my IBS making it hard to go to the bathroom.  

 

Amidst of all this suffering one day in 2013 I got a letter in the mail saying I was next on the list to rent a small apartment for people with disabilities in Stamford, CT.  The news made me so happy because I had waited for eight years for this opportunity, but at the same time I was scared due to my many health issues.  By October of 2014 I was so ill that I couldn’t drink or eat and weighed only 92 pounds. I remember calling my college professor Susan Rietman who advised me to come to Mount Sinai where they were able to find a treatment that I could tolerate.  Another miracle. I spent my 40th birthday in Mount Sinai hospital.  At this time, I was praying to God and I promised Him if He saved my life once again, I would start drawing and painting since art was always something I wanted to do.  After a few weeks I began feeling better but just a few days after being discharged from the hospital I came down with a pulmonary embolism and once again landed in the hospital.  Doctors warned me if the blood thinners didn’t work, I could die. I was petrified but I kept thinking about my dream with God and somehow, I knew I was going to be okay.   

 

A year before when I watched a movie called Heaven is For Real, I was introduced to the artist Akiane Kramarik’s life and work.  This child prodigy inspired me to do art, especially to paint.  Her story about meeting God helped me to see and believe that my dreams where for real.  One of my dreams is to meet her. 

As soon as I was better a close friend of mine David Anderson helped financially to buy art supplies to start my art.  He always believed in me even when I doubted.  I began to teach myself how to draw and paint. I am mostly self-taught in fine arts. I should mention that for me learning is a true challenge because I have Attention Deficit Disorder and Retention Deficit Disorder, two challenging learning disabilities. I’ve discovered that I can learn best hands on.  So, for the past four years I’ve been drawing and painting in different mediums such as gouache, dyes, watercolors, color pencil, graphite, acrylics, oils and pastels. Because of my disabilities and limitations, I work a lot from photographs. 

 

I started doing portraits after I began volunteering in a daycare doing arts and crafts with children once a week. They inspire me to draw and paint them.  I also draw and paint animals.  I also love to paint animals, including people’s pets.  I work with a lot of details, so my work looks highly realistic. I have a true passion for what I do. I have entered over 10 juried exhibits where my work was accepted in all the shows. In January of 2017 I won third place at the Stamford Art Association.  I entered the very first portrait I ever did which was of my mother, who sadly I’m losing to Alzheimer’s disease.  Winning with the portrait of my mother meant so much to me.  I went on to win first place with the portrait of Jaden in graphite at the Rowayton Art center. And I won third place with a graphite portrait of Melissa. My accomplishments have made me work ever harder.  My story was published in a Spanish newspaper called La Voz and most recently it was published in English and Spanish in a magazine called Latin Colors…  You can go to the following link, Carina Imbrogno, Artist and Champion of Life – Liber-Art. 

 

I’m very grateful for the connections I’ve made through Instagram.  I got very inspired by a friend on Instagram by the name of Richard Macwee who is based in Scotland and is an amazing wildlife artist.  His work inspired me to continue drawing animals. I also feel very grateful and blessed to have migrated with my family to the USA where my life has been saved so many times.  My goal is to eventually teach what I know and to keep getting better and better at what I do.  I am open to trying different techniques. I have my studio is my small living room, but I hope to one day have a studio away from my apartment. 

Click Here to see more of Carina’s artwork.

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Alyssa Holtrust

Hello, my name is Alyssa and I am a scoliosis fighter! I have been a dancer since I was 3 years old. I loved everything about dance but as I got older, I became concerned about my appearance. When receiving my scoliosis diagnosis at 15 years old, I felt relieved because I finally had an answer as to why I only had one curve at my waist, why my shoulders seemed out of line, and why I was constantly in pain. What I thought was a “normal” part of development was so much more. My orthopedic surgeon recommended that I should wear a brace for 23 hours a day for 7 days a week until I stopped growing. Unfortunately, the brace was too expensive. I knew I needed to stay active, so I kept dancing alongside my peers for several years, but my condition worsened rapidly. I began to experience numbness in my toes which then grew to my legs; my pain also increased drastically. I had an ice pack and topical pain cream on hand during each dance practice. The muscle I had built from dancing for so long kept me standing, but my orthopedic surgeon made it clear to me that if I did not undergo corrective surgery, I could be in a wheelchair before I turned 30 years old. When I was 19 years old, I had a spinal fusion (T4-L3) and my outlook on life completely changed. I was angry, and I felt that my quality of life had decreased. I had incredible support from my family and friends, but I didn’t have anyone in my life who understood my condition and dancing wasn’t enjoyable anymore. I wasn’t aware that there was a whole community of young women and men experiencing the same thing as me.

I decided I needed to make a change. I slowly started to become active again to build up my strength. I tried yoga, weightlifting for women, cycling, and kickboxing. All of these activities helped build up my confidence to begin dancing again in 2019. I realized for almost three years that I had been standing in my own way of continuing to do what I really loved which was dance. Dancing again has been no easy feat, but it has been one of the most rewarding experiences. I started looking for ways to inspire other young women and men to continue what they are passionate about despite feeling insecure or having a limited range of motion. If you or someone you know has scoliosis, show your support by making them feel comfortable, loved, and continue to encourage them. Remind your loved one that their experience is normal. I’ve been given another chance at life to remain active and I’ve learned many valuable lessons about personal growth. I am so thankful to have my family and friends support me during my experience!

Here are some of my post-surgery tips:

  1. It’s painful, so try to maximize your comfort – use ice packs, extra pillows, and wear loose fitting clothing. Maybe pick up a pair of fun fuzzy socks too!
  2. Follow the instructions from your surgeon – if he/she says it’s time to walk, set a goal for yourself (even if it’s just a few steps) and do it!
  3. Ease back into exercise – be mindful of how your body feels and consult with your doctor about low-impact stretches or exercises to build up your strength.
  4. Let other people help you – after surgery you may be more dependent on people around you for assistance. As much you may want to be independent (like myself), your loved ones will want to help, so let them!
  5. Stay positive – do things that make you smile during recovery like reading a book, watching movies, playing games with your family and friends, and setting achievable goals for yourself. You can do it!
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