Dystonia Medical Research Foundation
A Mother's unending love through a rare journey!
Melissa was excited when she found out that she was pregnant with her first daughter after two boys. She was an only girl herself, and had dreamed of barbie houses and tea parties with her newest daughter Olivia. All of that changed when her healthy pregnancy became high risk at 35 weeks and that's when she became a detective, searching for answers and beginning her extremely rare journey.
Something unknown was causing Olivia to be stressed, and have no movement in utero. The doctors were scared, Melissa and her family were scared. She spent endless hours in the doctor’s office performing stress test, ultrasounds, blood work, and performing amniocentesis to check Olivia's maturity. Her lungs were not mature enough to deliver her but the doctors knew she had a better chance of surviving if she was delivered.
On August 4, 2010 Olivia was born. Melissa say's "I can remember her cry was weak, she was blue, and my heart sank because my biggest fears were coming true." Olivia had a fever of an unknown origin, her body temperature was failing to regulate. Her stomach and chest was having spasms and she couldn't eat or keep her formula down. The nurses and doctors suggested that she must have swallowed a lot of fluid and was having severe gurd. In the days, weeks and months to come Olivia grew worse she was diagnosed failure to thrive. "She was so little, fragile, and I was her voice I knew I needed to find out the cause of all this so I became a detective " Melissa said. Olivia missed all of her milestones, she was unable to straighten her legs, arms, or turn her neck to the right side. Her little hands were fisted, she was unable to sit, and she was uncomfortable and cried in pain for hours as she fought her own body. Her eyes would roll backwards and disappear only exposing the whites of her eyes. Blood pressure and glucose levels would Fluctuate . After several disappointing appointments without answers with doctors from all over the state of Kentucky. Melissa fought to have her appointment moved up at Children's Hospital in Cincinnati Ohio. "I started researching myself on the internet, staying up late reading, and watching video's to hopefully find some insight" Melissa says.
After several months of seeing over 6 specialists, and running extensive testing most sent to outside labs throughout the states. Olivia was diagnosed with an extremely rare neurotransmitters disease called Tyrosine Hydroxylase Deficiency Infantile Parkinsonism Variant. How rare you ask? Currently there are only 52 confirmed cases in the world. This disease is genetic and Melissa and her husband found out they were expecting a fourth child during Olivia's diagnosis process. Madison was born in December 2012 and also has been diagnosed with the same rare genetic disease. Together they both have several complications from TH. This disease causes severe generalized dystonia which affects Olivia and Madison’s legs, arms, cervical area, tongue, throat, chest, stomach, eyes, neck, and other internal organs. Dystonia is a neurological movement disorder that is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. Olivia and Madison also suffer from fine and gross motor impairment, temperature irregularities, Oculogyric crisis (OGC), autonomic dysfunction, and feeding and breathing difficulties.
Since their journey began Melissa has made it her goal to find a cure. She is their voice, their advocate, and she will continue to fight until she finds a cure. She is very active with the non-profit charity Dystonia Medical Research Foundation. She was awarded the Douglas Kramer award which recognize outstanding young advocates. Melissa has traveled to Washington DC as a legislative advocate for the last two years and shared her story with senators and legislators to promote the importance of funding for rare diseases. She has been nominated for Global Gene's champion of hope award for 2014. Melissa has also planned, organized and hosted the first event of its type in Cincinnati Ohio called Dystance4Dystonia Cincinnati Zoo Walk which took place in September 2013, and will be taking place this upcoming September. This event last year gathered over 400 people who are affected, or love someone who is affected with dystonia. This event is gearing up to be even bigger this year
Melissa is an inspiration, my hero. There are not many mothers that fight as hard as she does, and through it all she keeps a smile, which I must add is contagious. She always says "Life isn't easy, we battle daily, but to be optimistic is show my children that we will not give up, we will not stop, until the day we can say we did it, we found a cure!"