As told by her mom, Julie Dutilly
When our second daughter Mary Helen was about 18 months old she began having stomachaches at night. When they became more frequent in early 2007, we took her to the doctor in Florida but they couldn’t find anything wrong. In October of 2008 we moved to North Carolina. By August of 2009 her stomach problems were really bad, and she had stopped playing and almost completely stopped eating. In mid-August, after a week of Mary Helen dealing with vomiting, I called her pediatrician in fear that I was slowly watching my tiny 4-year-old who weighed only twenty-three pounds starve to death. The doctor met us at his office on that Sunday morning, ran tests, and concluded that whatever was going on was serious and that a diagnosis was badly needed. Mary Helen recovered after a few days of rest and nausea medication, and we waited a couple of months to see a Pediatric Gastroenterologist at Brenner Children’s Hospital to hopefully get some help. During this time I was praying and begging God to help us find an answer or just heal her right now.
In November 2009, we went to Brenner for the first time to see Dr. Hill. He listened intently, asked lots of questions and came up with a diagnosis of Cyclical Vomiting Syndrome (CVS), pending a couple of tests he wanted to order. Mary Helen began taking medicine to help with her stomach issues which the doctor described as “migraines in her stomach”. The medicine helped and Mary Helen began to improve. There were several setbacks with her failure to gain weight, additional discoveries, and medicine changes, which caused us to see other specialists. I continued to pray and ask God to just heal her outright.
In October of 2011, Mary Helen began to have pain in her legs to the point she couldn’t walk for than 5 minutes at a time. We took her to her Pediatrician and they took x-rays and ran blood tests. One of the blood tests came back and the doctors told us that Mary Helen had tested positive for arthritis. This was a blow. What’s going on God?! We were referred to a Pediatric Rheumatologist at Duke University Hospital with the soonest available appointment being February of 2012. I knew she didn’t have arthritis, and I contemplated cancelling the appointment many times over the next few months. As we got closer to the Duke appointment date, I began to hear God tell me, “Your Answer is there.”
With much skepticism, we went to Duke in February. They examined her and I overheard whispering between the doctors about something called Ehlers-Danlos Syndrome. I never got to ask about it before we were whisked away quickly for an EKG because her heart rate was irregular enough to concern them. Eventually we would head home with very few answers and a possible new diagnosis of issues with her heart. We were very dismayed, but as soon as I got home I remembered the overheard conversation and began to research Ehlers-Danlos Syndrome. It didn’t take long for me to realize that what the doctors had been talking about was a genetic connective tissue disorder that affects the entire body, often inherited maternally. As we would come to find out, this was our Answer.
Our appointment at Duke was on a Friday. Early the following Monday morning, we got an urgent phone call from Duke that Mary Helen needed to see a Cardiologist immediately, and that they had set up an appointment in 2 hours! We scrambled to get ready and rush out the door with very little time to digest this new bump in the road and new round of tests.
Everything came back borderline OK, but a Cardiologist would now be added to Mary Helen’s list of doctors, which had grown to include a Pediatric Gastroenterologist, a Nutritionist (for something insidiously called “failure to thrive”), and a Pediatric Neurologist (for the “migraine-like” aspect of CVS).
At the end of the week, Duke called back requesting yet another new appointment and a new specialist that we need to see, a Geneticist. I was floored. What next?!
Mary Helen had been doing so well with her CVS that when we saw the GI in May of 2012, he decided to see how she would do if we discontinued her medicine. Still waiting on our Genetics appointment, we took her off her medicine for CVS and declared to the world that she was healed. Our line in the sand was 3 months off medicine because it would take that long to completely get all of the medicine out of her system. During months one and two, June and July, she was doing great! But then in August, right at the 3-month point, Mary Helen again got incredibly sick.
For 7 days she couldn’t keep anything down. We saw the doctor and they wanted to hospitalize her immediately. I asked the doctor to give us a couple of hours and if it didn’t improve we would do that. I prayed the whole way home and when we got inside I began to give Mary Helen small sips of water, with total faith that she would keep it down. She did! Thank you Jesus! With the news that she was able to keep fluids down, the doctor agreed to let her stay at home. Over the next several hours and days she slowly improved, but after this scare the doctor made the decision to place Mary Helen back on her medicine to safeguard against further episodes. The healing that we had proclaimed felt like it was becoming another disappointment.
During this low time I had a conversation with my pastor, and when he asked me how I was doing, my answer was, “Honestly? I’m angry, hurt, and disappointed with God.” I’ll never forget his answer. He said, “That’s OK, just don’t stay there.” It took a little while, but after a short season of venting it all to God I was quiet and in that quiet I heard God say, “Don’t diminish her purpose.” Clinging to those words of revelation and comfort, my heart slowly began to heal and I began to have Hope again.
Towards the end of 2012 we had our first Genetics appointment and Mary Helen was officially diagnosed with genetically inherited Ehlers-Danlos Syndrome (EDS). We were told she would need to see a Geneticist at least once a year for the rest of her life.
We adjusted to a life with an array of doctors and a list of appointments that kept us at Brenner Children’s Hospital for an 8 hour day every 6 months, a whirlwind of information and tests which were necessary as we learned to deal with this official diagnosis. Through it all we continued to pray for Mary Helen to be healed.
Over the next 5 years we would slowly begin to see the evidence of her healing. First, we were released by the Rheumatology department with a clean report of no arthritic symptoms, and then were released by Audiology. Yes, even Mary Helen’s ability to hear had come into question, but this was ruled out once her hearing tests were stable for 2 years.
Eventually, once no heart problems could be found, Cardiology released Mary Helen, followed by Gastroenterology releasing us as her GI stomach issues began to clear up. In turn, Nutrition released us as Mary Helen attained a healthy weight gain. Finally, with no more migraines and all trace of CVS gone, we were released by Neurology!
Back in 2012, when her Rheumatologist made the original diagnosis of Ehlers-Danlos Syndrome it had been confirmed by two different Geneticists. So now in the midst of all this improvement, Mary Helen had only one cautionary specialist left, Genetics, with checkup appointments once every year or two. I was ecstatic. God had slowly healed her symptoms, and I was content in the situation where He had placed us.
Because Mary Helen hadn’t been seen in about 2 years, in July of 2018 we were scheduled for a routine appointment with a new Geneticist, as our previous doctor had moved away a few years before. Significantly, this appointment had been scheduled months in advance, but would end up taking place at the exact mid-point of a 21-Day Holy Fast which our church was observing across the corporate body of believers. The resulted of this was that starting on the morning of Mary Helen’s appointment and throughout the day, there was a significant core group of intercessors who were lifting her up in prayer, having walked beside our family for the last seven years of Mary Helen’s journey with EDS.
At our appointment, the doctor went through the normal process of checking joint hypermobility, skin examination, taking measurements, and other indicators of this genetic condition. When the exam was finished, the doctor said that she wanted to re-evaluate Mary Helen a second time for EDS. As she began a new evaluation, she noted that Mary Helen’s skin wasn’t overly thin. Thin skin tissue was one of the markers of EDS which was very evident in Mary Helen’s original diagnosis. She also observed that the degree of Mary Helen’s joint hypermobility was reduced, from an 8 to a 6 as measured on the Brighton diagnostic scale. After checking a few other “markers” and once again reviewing her medical history, the doctor looked over at me and calmly told me that Mary Helen no longer has Ehlers-Danlos Syndrome.
The Geneticist continued, “You can remove this tag from her now. After today, you never have to come back.” It was the doctor’s voice that spoke out these words, but in my Spirit I could hear the voice of our loving heavenly Father speaking unimaginable, miraculous, healing restoration.
“You can remove this tag from her now. After today, you never have to come back.”
I’m not really sure what happened after that, but I did think to snap a quick, slightly blurry, picture to commemorate the moment. In a daze, we made our way to the car in silence and complete shock. I called Daniel when I got to the car and relayed the facts of our new reality to him, but I still couldn’t process the meaning behind the words.
As we drove home from Brenner Children’s Hospital for the last time, Mary Helen began to cry and I asked her if she was ok. Her reply was priceless.
“It’s finally over.”
I drove speechlessly, in awe of my God. I could not find words enough to tell Him thank you, knowing that from this day forward, nothing anyone could ever say to our daughter Mary Helen would ever convince her that God does not heal, does not restore, and does not revive.
When we got home I called several friends who had been prayer warriors with me for Mary Helen’s healing throughout this journey. It was time to tell our testimony. Eventually, it all began to sink in with each retelling and the reality of Mary Helen’s TOTAL healing brought me past shock to tears.
Which it still does.
We are in awe, because science would tell us that the only way to be rid of a genetic disease is to change the carrier’s genetics. Not only did God slowly heal each part of Mary Helen’s body over a period of time, He even went so far as to change her DNA so she would no longer have the tag of a genetic disease. God changed and healed our daughter’s DNA, one cell at a time, one drop of healing oil at a time.
And now she is whole and healed.