Over 2.6 million people worldwide are affected by Pulmonary Hypertension and Multiple Sclerosis, either directly or through a loved one. By donating, you can helpe the world move towards a better and brighter future.Donate to PH Donate to MS
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Mackenzie Grubich brightened the lives of her family and friends with her constant, contagious, and incredible smile and big hugs. She had a way of warming the hearts of all ages. She was a fun friend and yet a quiet companion who lived with enthusiasm. She loved life and made the most out of it. She was most often found riding her Dora 4 Wheeler throughout the neighborhood waving and saying "Hi" to everyone.
Mackenzie was born in August of 2004 with both of her lungs partially collapsed. She landed in the PICU often, was on a restricted diet, and within the span of 4 years, visited 12 specialists searching for a diagnosis. Mackenzie endured blue episodes, had a high red cell blood count, and was in the lower 3rd of the charts. Throughout her countless doctor appointments, blood draws, etc., Mackenzie's enthusiastic spirit did not falter. Finally, at the age of 4, Mackenzie was diagnosed with Pulmonary Hypertension secondary to Patent Ductus Arteriosus (PDA). PDA is a condition in which the ductus arteriosus does not close. (The word "patent" means open.) The ductus arteriosus is a blood vessel that allows blood to go around the baby's lungs before birth. Soon after the infat is born and the lungs fill with air, the ductus arteriosus is no longer needed. However, Mackenzie’s hadn’t closed and with mistreatment for four years was too large to close and causing high blood pressure in the lungs (pulmonary hypertension). Despite rapid progress in treatment for pulmonary hypertension, repeated misdiagnosis causes many patients to receive care only at advanced stages of the illness. Mackenzie was placed on sildenafil (Revatio) better known as Viagra a vasodilator. There are currently 9 FDA approved therapies for Pulmonary Hypertension, however, none of those therapies have been approved for pediatrics by the FDA. At the age of 5 Mackenzie developed pneumonia while vacationing in Florida. She was placed on a respirator and flown back to Michigan. After a 6 week battle with chronic pulmonary hypertension and pneumonia, Mackenzie became one of God's angels.
Mackenzie is love, she is happiness, she is determination. She was little in size but most importantly big at heart. She drew us all in with her smile, her hugs and her waves and most importantly she taught us to ignore limitations that life may have and instead approach each day with enthusiasm.
In 2009, through inspiration from my girlfriends and my daughter Mackenzie, I took up competing in triathlons. The following year, Co-Race Director, Steve Rummel energized me
to start running further and I completed 3 marathons. Racing has allowed me to meet other inspiring individuals as well as encourage others to get out and run, get fit and stay healthy. During Mackenzie’s battle
at the University of Michigan Hospital, the DeWitt Community was extremely supportive and bringing this event to DeWitt is one way to give back to such an awesome community.
- Melinda Rummel, Co-Race Director & Mackenzie's Mom
I think that what happened to our little girls is so tragic I subconsciously try to push PH out of my mind. It's complicated because I want to fight PH in honor of our girls
but I also hate thinking about the disease that killed them at the same time. I guess it's just easier to think of them as angels up in heaven than humans who suffered on earth.
We will always yearn for what could have and should have been.
- Julie Lotarski, London's Mom
Our daughter, London, came into this world in 2016 surrounded by so much love. Never did we think we would be learning 6 short weeks later that she was suffering from severe complications of Pulmonary Hypertension (PH). Our lives were turned upside down over the next three weeks while we watched our daughter struggle for her live in the Pediatric Intensive Care Unit (PICU).
London was a fighter. While we were in the PICU with London, doctors told us, that the PH could have caused her to be a SIDS baby. She could have easily just passed away in her sleep one night, and we might have never known why. But that was not what London was meant to do, she was meant to fight. Our first day in the PICU, the doctors seemed shocked that she was able to survive her first surgery when she was put on ECMO, which is a machine which takes over the work of the heart and lungs. While on ECMO London faced many complications and continued to surprise everyone with how hard she fought. Because of the risk of complications, it is recommended to only be on ECMO for 7-10 days, but London was not making enough progress to come off. She fought on ECMO for 21 days before finally losing the battle. Our baby girl passed away peacefully in my arms, when she was just 9 weeks old. Blown away by this little baby’s ability and spirit to fight so hard, we started using the phrase “London Strong.”
Madison Wegener was known for her courageous spirit, her empathy for others, her beautiful, contagious smile, and her crazy laugh. Even at a young age, she had a sense about her that drew people close, and once you were a friend of Madison’s, you had a friend for life. Madison loved her Great Danes, Gatsby and Poe, historical narratives, thrill rides, horses, archery, sushi, and ice cream. Favorite fall activities included walking through the woods, making maple syrup at her grandparents’ farm, looking for monarch caterpillars, and all things Halloween. She looked forward to participating in the Dewitt, MI fundraiser each year, and Team Madison—running under the title of Pound the Pavement—never disappointed.
Born in August of 2005, Madison appeared to be a healthy baby. However, by October she had yet to gain the appropriate weight for a child her age, and she was deemed a “failure to thrive” baby. Numerous tests were conducted when she returned to the hospital, but no definitive reason for her lack of weight gain was found. She was eating regularly and latching appropriately, so she was simply labeled a slow and “lazy eater” and banned from using pacifiers. Over time she did gain weight, but she remained forever thin for her age. It was not until the age of six, after Madison passed out in her first-grade gym class, that she demonstrated symptoms of anything wrong. Looking back, the only clue was that that year, she had remarked that she didn’t particularly like gym class, as she reported that she “couldn’t quite keep up with the other kids.” In our presence, however, she ran and played like any other youngster, so we hadn’t thought much of it.
Madison was fortunate to have been accurately diagnosed immediately following her gym episode. Despite everything looking normal at the pediatrician, he refused to call her syncope episode a fluke, and decided to do an EKG test. That led to a couple of “possible red flags,” and he then made some calls and got us an appointment to see a colleague of his a few days later—a pediatric cardiologist. Upon performing an echocardiogram on Madison, she knew exactly what she was looking at: pulmonary hypertension. We were told to return home, pack our bags, and drive to the children’s hospital (about an hour away) immediately, where a team of doctors would be waiting for us in the intensive care unit. Our first hospital stay due to PH lasted fifteen days.
Madison’s pulmonary hypertension was found to be idiopathic, and it was determined that she was likely born with her. Her pulmonary pressures were so severe that the doctors couldn’t believe that she hadn’t passed out prior to that week, or that her fingers or lips were not tinted blue. Since we now needed a PH specialist and that hospital did not currently have one, we returned to our home state of Michigan in order to seek treatment there. Madison wore oxygen around the clock and soon had a central line placed into her chest so that she could continuously receive medicine via a small pump. She learned to smile at others who curiously stared at her medical equipment, and as she matured, she refused to allow PH to dictate her life. “I’m still Madison,” she would say, “but now I just have PH.”
As Madison approached puberty, her disease slowly began to progress. Her doctor was treating all three known pathways to address this progression, and by the time Madison was fourteen, she was on eight medications, including her central line drug. Only one of them was FDA approved for use in pediatrics. By middle school Madison was using a wheelchair to get around school, as she was too short of breath to make it otherwise, and by high school, she had to pause even to walk up a short flight of stairs. While she was evaluated and deemed a good candidate for a relatively new surgical procedure done in St. Louis, MO—the Potts Shunt—which could alleviate some of the pressure off her heart, it was determined that she needed to try the “easier” fixes first, which included increasing her medicines. A routine echocardiogram indicated that her pulmonary pressures were slightly elevated, but within a month they unexpectantly more than doubled. A difficult right heart catheterization landed her in the intensive care unit, and testing revealed that Madison was in right heart failure. She was no longer a candidate for that surgical procedure unless her extremely elevated levels could come down, and instead, there was talk of having to list her for a double lung transplant. Five days after Madison entered the hospital, she suffered a heart attack. The medical team was able to resuscitate her and get her hooked up to ECMO, a machine that uses a pump to circulate blood through an artificial lung and back into the bloodstream, but for Madison, it was too late. Her brain had been deprived of too much oxygen, and it was determined that she was brain-dead. While her earthly body was still there, Madison had left to be with the angels.
Madison knew that she might someday need new lungs, and she became an advocate for organ donation at a young age. In her selflessness, upon her death she was able to save
four lives and provide the gift of sight. She was our hero long before this act, but we know now that her legacy will live long in the lives of others. As our first-born, Madison immediately became our everything,
and in her death, she saved the lives of someone else’s everything. Ultimately, it is how she would have wanted it to be.
- Cheryl Wegener, Madison's Mom
I have fought through several physical and emotional symptoms, but there are thousands that have more severe symptoms than I do.
Fortunately, I am still able to enjoy an active life - golfing, skiing, swimming, biking and running. My goal is to stay active and keep MOVING.
I have had to adapt some things in my life, but I have more I want to accomplish. It is always in the back of my mind how quickly and permanently these things could be taken from me.
- Steve Rummel, Co-Race Director
Steve Rummel, Co-Race Director, was diagnosed with Multiple Sclerosis (MS) late in 2007. MS is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The body's immune system attacks the nerves and causes a "short circuit" that disrupts messages from the brain to other parts of the body. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.
One day, Steve woke up with most of the vision gone in his left eye. He was referred to experts at the MSU Department of Neurology, and has been involved in a clinical study there to advance research into helpful drug treatments. Up until recently, the only FDA approved medications were disease-modifying injections. However, the last few years have seen the introduction of new oral medications. Unfortunately, there is still no cure for MS.
The National Multiple Sclerosis Society will use funds collected from this event to not only support research for a cure tomorrow, but also to provide programs which address the needs of people living with MS today. Over 93% of all contributions are used directly for research, programs and assistance.