Helping Madisyn to Heal...

Hello, my name is Nicole Wolden, and I have created this GoFundMe page in the hopes of helping my brother and sister-n-law offset the enormous financial strain my niece, Madisyn's illness, has had on the family.

For the past 2 years, my sweet, once vibrant, and active niece, Madisyn Dudek, has struggled with gastrointestinal complications. She has been in and out of the hospital, requires multiple weekly visits to specialists, is on a feeding tube, and has had to give up sports. Oh, did I mention this is her senior year of high school?

My kind, thoughtful, and once athletic niece is weathering the storm with such grace, but it has not been easy. Balancing the emotional, physical and financial strain has been challenging. My brother and sister-in-law have been amazing, never complaining and just simply doing what they can do to relieve the pain my niece experiences daily.

Madisyn has an opportunity to participate in a research study with a Gastroenterologist Specialist at Children's Hospital in Wisconsin, specifically for patients with Ehlers Danlos Syndrome and Dysautonomia with specific GI dysfunctions and severe nausea. The study requires Madisyn and one of her parents to travel back and forth to Wisconsin for a minimum of 7 weeks, Saturday-Monday. We hope this study produces answers and options for dealing with this disease and allows Madisyn to eat solid foods again.

Here is where each of you can make a difference! I am trying to raise 30,000+ dollars for my brother and his family to help offset the enormous expense this disease is costing and will continue to cost. Matt and Karin have not felt comfortable asking for help, but friends and family continue to ask how they can help and how to donate. Please consider making a contribution of any size, as I know it will help ease the burden for Matt and Karin and allow them the space to concentrate on Madisyn getting well and finding a path forward toward a somewhat normal life.

Madisyns' story:

Madisyn's medical journey came to the forefront about two years ago with the onset of Gastrointestinal complications that just progressively started getting worse. After many tests, trials of GI meds, and the involvement of more doctors, she finally ended up connected to the clinical team at Children's Hospital Gastroenterology. They continued, without success, to figure out the root cause of all of her medical symptoms, which led to the addition of clinical team members from Cardiology, Neurology, Rheumatology, and Endocrinology.

Unfortunately, Madisyn also started having acute symptoms of Dysautonomia (a diagnosis she had in 2018 but mainly was controlled up to this point). The symptoms included multiple daily syncope episodes, extremely low heart rate and blood pressure, further complications with her GI system not functioning correctly, and a 20-pound weight loss.

Shortly after, she was hospitalized in January 2021 at Children's for multiple weeks to stabilize her. She was placed on a Nasogastric feeding tube, and we ventured into a schedule of continued outpatient appointments/treatments at Children's Hospital up to three times a week. During her hospitalization, one of her attending doctors was committed to digging deeper into what was happening. After referring us to Genetics, it was confirmed Madisyn was diagnosed with Ehlers Danlos Syndrome (EDS). EDS is a condition where her connective tissue is hypermobile and can lead to organ prolapse, cause upper and lower gastrointestinal tract complications such as swallow difficulties and dysmotility, severe nausea/abdominal pain, vomiting, bloating, absorption and food intolerance concerns; autonomic disturbances of heart rate and blood pressure, temperature regulation; and organ/ systemic inflammation.

Her symptoms started making sense as she was experiencing all of the identified complications! In addition to the gastrointestinal issues, Madisyn had constant injuries while playing club soccer from a young age- frequent muscle tears, dislocated joints, breaks. She now is dealing with continuous subluxations of her shoulders from doing simple tasks like opening a door or rolling over in bed. Unfortunately, one of her shoulders fully dislocated last week so she will get an Orthopedic surgeon consult later this week.

Going into the summer of 2021, Madisyn was very excited to get back to playing on her academy club soccer team, as this was what her extracurricular/social life revolved around, and a sport she started playing at the age of three. At this point, she had already missed out on playing for her High School Varsity team in the Spring because she was still too weak, and she could not safely play with her NG tube in place. She loves playing soccer, and that is where she has formed so many meaningful relationships with her teammates/friends, coaches, and mentors. However, even with extensive Physical and Occupational Therapy and an incredible effort on her part, Madisyn wasn't able to regain the strength, muscle tone, and stability needed to safely return for summer training either. Madisyn has since had to accept that she will not play soccer again.

Madisyn was finally free of her NG feeding tube in late summer, but this only lasted for a short two-week period. During this time, things started to decline quickly following another rapid ten-pound weight loss, a continuation of all of the GI complications with the level of intense nausea and abdominal pain increasing and her system not even tolerating her formula feeds at this point. Unfortunately, she was admitted to the hospital once again.

During this admission, one of the fantastic GI doctors treating her talked about sending her to see a Gastroenterologist Specialist at Children's Hospital in Wisconsin who is conducting a research study on patients with Ehlers Danlos Syndrome and Dysautonomia with specific GI dysfunctions and severe nausea. He reached out to her with Madisyn's medical profile. The doctor from Wisconsin has now been consulting with the Colorado team about Madisyn's case, which has led to some changes in her medical treatment. Her Nasogastric tube was replaced with a Nasojejunal tube, bypassing her stomach and going directly into her small intestines. This has been a positive change for Madisyn regarding extreme nausea, abdominal pain, and her body tolerating formula again. However, she still requires continuous formula tube feeding with no oral intake.

Given that Madisyn is still on continuous tube feeds and goes through periods of formula intolerance, the team in Wisconsin started to arrange for her to come out there to receive treatments they can provide there that are not available here in Colorado. The goal of these treatments is to: significantly decrease her severe nausea/abdominal pain, increase her ability to tolerate formula feeds, increase tolerance for oral feeding and the ability to enjoy orally eating food/drinks again, and improve her autonomic functioning. Unfortunately, after a process of appeals, Dudek's medical insurance will not cover any treatment Madisyn gets at Children's Hospital in Wisconsin. Some of her care is covered by the research portion of what Madisyn will receive, but the Dudeks' will have to pay out of pocket for all other clinical, medical and travel expenses.

After a long few months of planning and organizing, Karin and Madisyn started the process this past week, traveling to Children’s Hospital Wisconsin, to start the pre-treatment tests and evaluation and the first clinical treatment. Matt and Karin will now rotate, traveling back and forth to Wisconsin with Madisyn every Sat-Mon night for the next seven weeks for her to receive her treatments at the hospital. This will be followed by another week, where Karin will go with Madisyn to receive her end of treatment care and tests.

Madisyn is desperate to get back to eating some foods/drinks, and we are so hopeful that these treatments will help her with that. Madisyn has worked very hard to remain an amazing student throughout this often debilitating process, and has been accepted into all of the universities to which she applied! Since the beginning of High School, she has always known she wanted to do something in Science/Healthcare. Through her medical journey, Madisyn has been fortunate to have some exceptional healthcare providers, and unfortunately, some very adverse experiences with some providers as well. She now knows the life changing impact one of these providers can have… both positive and negative. That is why her dream is now to pursue a BSN/RN Nursing degree/licensure, with the ultimate goal of becoming a DNP (Doctor of Nurse Practitioner). We all are coming to terms with the fact that Madisyn’s life is going to be different with her Ehlers Danlos Syndrome and everything that comes along with it, but we are hopeful that we will get to a place where it can be managed with a better quality of life. She has worked so hard the past couple of years to power through school, and life in general, focusing on the positives given all of her medical challenges. We see her fighting spirit every day and can’t wait to see her start to fulfill her dreams and forge her future path.