Team Mighty Mito Zebra Girl

This is a picture of me with my little Mito Sister Brionna at her Mito walk and she just gave me a special medal for raising $1000 for Mito Research.




My Journey Began At 6 Months Old In Athens’s, Greece

At the age of 6 months my dad brought me to the hospital with G.I complaints. The hospital notice that I was small and pale, so they tested me for a disease that’s common in the Mediterranean area. It's considered a rare disease, but it's the most common blood disorder in the world called Thalassemia. My test came back positive with Beta - Thalassemia Major (Cooley's Anemia) which is a severe form of the disease that requires lifelong blood transfusion and ongoing care with no cure. Once I was ready for discharge they could not find my parents. I was then put up for adoption and was assigned a birthdate (Feb. 25) because there was no recorded of my birth and my family history is unknown.



2 years later after being abandoned at the hospital I was adopted over sees to Michigan.

Shortly after being adopted I was diagnosed with Central sleep apnea (the neurological kind) and I had my tonsils and adenoids removed. At night I would wear a sleep apnea monitor and oxygen, because my oxygen level would drop and my Co2 level would rise. Then eventually I needed a BiPap and oxygen combined. In the last several year I graduated from needing oxygen at night and am currently only using a BiPap (VPAP ST)




DEXTOX Therapy….

I have been admitted 2 or 3 times to the ICU for detox therapy because I am allergic to my life saving 12-hour sub-q infusion called Desferal. The medicines job is to get rid of iron out of my body so that doesn’t attack my vital organs. The problem is my body had a hard time accepting this medication, but without it I would die. So, I didn’t have a choice. We tried to desensitize my body from this this medication because I was having nightly rashes, hives, and problems breathing from it. I was fine if I stayed on a very low dose but being on a low dose wasn’t very effective in treating the iron overload. Year latter a doctor recommend putting hydrocortisone mixed in with the sub-q infusion and that has help dramatically with reactions. I barley rarely have reactions now a days.



Summer of 2000 When I was 8 years old I did an experimental drug trial in Boston, MA

I did an I.V drug trial to see if it could help me increase my Hemoglobin (Hb) and make red blood cells. It never worked for me and before I could do the drug trail I had to have my spleen removed otherwise medicine would of eaten it and I needed to have a port placed. The medicine made me feel sick and weak and my Hb level ended up getting down into the critical range bellow 6. I also lost my first original port and had to have another one place since the needle wasn't in correctly and it was infusion under my skin causing lots of pain and swelling.



In the early 2000's I started loosing my hearing ​

​I was 10 years old and in the 5th grade when I started to lose my hearing. In the Elementary school, I went to we would take a group hearing test by classrooms. When we would hear the tone, we would raise our hands. I was the only one in the group that did not hear the tones very well and the other kids were staring at me like you didn’t really hear that? I was pulled aside after the group test and was set home with a note explaining I failed the schools hearing test. When I was in the 6th grade I received my first pair of hearing aids and used a phonic hearing system. I have been on and off the steroid Prednisone to help with my hearing. Have had decrease my life-saving Iron Chelation Therapy that I take nightly for 12-hour sub-q to try to save my hearing. I have had to stop it and take a break from it too which leaves my body to be attacked by iron overload. Iron overload in my body will attack vital organs by hardening them and creating organ failure.



Growth Hormone Shots....

I had some special tests done that showed that I have a Growth Hormone Deficiency. We then started doing growth hormone shots and ending up needing to stop them. At the time, I was either 11 or 12 when my mom noticed I was limping when I walking to the outpatient hematology/oncology. She asked me why I was limping. She asked me if it was my leg, my knee, my hip that hurt and I just couldn't quite understand where exactly my pain was coming from. I told her I think it’s my hip. I was due back to see my endo doctor the following day. I had an X-ray before my appointment and no sooner when we got to the endo's door they stop us and told us I'm not allowed to walk, I need to sit in this wheelchair, and that I'm going to need to be admitted for emergency surgery. I had a left slipped femoral that I walked on for over 2 weeks and the medical professionals were surprised at how I could within stand that kind of pain. After having both my hips pinned I also needed 2 additional surgeries, this is because I walked with my hip out of place for a least 2 weeks and it caused me to devolved nock knee, where my knees turned inwards and would literally nock me over. I had staples put in the growth plates of both my knees. The purpose of those is that when I would grow my knees would correct themselves and they did. I was still having lots of issues with my left knee in general that my orthopedic doctor ordered an MRI to see if I would need an addition surgery, which would have involved fusing my knee. Luckily, I didn't need that and that was a relief!

Throughout my early teenage years I had lots of growth plate issues. I Kept breaking my growth plates. I broke my left and right growth plates in my wrists twice, along with my left shoulder once. I was also having achy joints that would be hot to the touch and inflamed. My knee and wrists joints were unstable and I could literally fell them shifting. Little did we know until years later I had Elhers-Danlos Syndrome otherwise known as EDS.


Years passed and there were things that just didn't add up with my health. I had many things that just didn't fit the thalassemia mold. I was sicker than most typical thalassemics....




My Mitochondrial Disease Story
I have shown many symptoms of Mitochondrial Disease ever since I was little, but my symptoms were written off by another illness I have called Beta-Thalassemia Major (Cooley’s Anemia) and the life - saving medication I have to take for it, that I happen to be allergic too.

From 2007 - 2008, I developed MRSA in the hub of my port-a cath and every time we used it, I would spike high fevers (of 102 - 105.3) and sometimes I would even go into anaphylactic shock within seconds of having my port accessed. It took almost a year for doctors figure out what was going on. During one of my routine blood transfusions every 3 weeks for the thalassemia, I spiked a fever and they could not get my temperature to go down. They admitted me to the floor and I had surgery to remove my port-a-cath and that's when they found out I had MRSA (so I was treated for that) and they also found out that the tip of the line was too far down into my heart. This was causing a node in my heart to be tickled, which explained why I couldn't breath and I was almost passing out within seconds of having my port accessed and flushed. My mom & I were told as a child grows who has a central line it starts pulling out a little bit, instead my line decided to embedded its self-down farther.

Every year, since having the MRSA I have been having issues. I strongly believe this is what may have triggered my mitochondrial Disease to go into hyper drive. I have now been stable for most part since around 2012, but from 2007 - 2011 it’s been a rollercoaster ride.

In March of 2009, I suffered from stroke number one and my mom took me to The Cleveland Clinic looking for answers. I had blood work done, urine analysis, an EMG/ nerve conduction test, and lastly a skin biopsy that conformed the diagnoses of SCAD (Short-chain acyl-CoA dehydrogenase) Deficiency with abnormal acylcarnitines. This type of Mitochondrial Disease however did not explain the stroke – like episodes and not much was well known when I was first diagnosed.





November of 2010, I started developing severe tachycardia where I would get nauseated, dizzy, start sweating (which is NOT normal for me), and vomit. My resting heart rate at that time was 120- 130 beats per min. I could not stand up let along walk without my heart rate jumping 30 - 50 beats. Doctors in town did EKG/Echo, Halter monitor, bubble echo. However once again they had no idea what was really going on, so they just wrote it of as the thalassemia causing issues.

I later went to Pittsburgh Children's Hospital to see a cardiologist and I had a EKG/Echo, Transesophageal echo (TEE), bubble echo, and a 30-Day halter monitor that only lasted a week, because I had multiple episodes within 1 week that doctor could tell I needed to be on Medication. The cardiologist prescribed a Beta- Blocker and that has really helped me. Little did we know at this time I was developing Dysautonomia and that I have gene that causes Tachycardia

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Later in February of 2011, I suffered from another stroke and in the summer of 2013, I saw Dr. Amy Goldstein at Children’s Hospital of Pittsburgh. She strongly felt that I had another form of Mitochondrial Disease called MELAS (Mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes) Syndrome. She ordered a Courtagen saliva DNA a test and test results came back with a Polygenic MELAS-like syndrome along with RYR1 (Malignant Hyperthermia) gene, RYR2 (encodes the cardiac ryanodine receptor) gene, PLGRKT (Plasminogen Receptor, C-Terminal Lysine Transmembrane Protein) gene, ACHE (Acetylcholinesterase) gene, & ALDH1L2 (Mitochondrial 10 - formyletrahydrfolate dehydrogenase) gene.









In 2016 I received my officially conformed diagnosis of EDS after seeing a EDS geneticist. I also saw a Dysautonomia neurologist who referred me to a Cardiac Rehab Program. I was in a Cardiac Rehab Program for several weeks at the Cleveland Clinic and it has been outstanding the results I gained from it. I have so much more stamina I’m not dizzy all the time, my heart rate has been coming down, my body is starting to readjusts itself...I can sweet some now as gross as that is being able to do this is a big deal since my body didn't really have this ability to cool itself off before. Just in general I feel like I’m doing better. I go back for more Cardiac Rehab soon.