Child faces rare disease with courage and strength
BY STAN PRIEBE
Imagine a daughter is born into your family. Imagine the excitement of looking forward to watching her grow up and do all the things little girls do. Now imagine those dreams are shattered after discovering she suffers from a rare degenerative disorder, which is both chronic and progressive. Now what? Everything has changed. Your life is suddenly filled with questions for which the answers come slowly.
Peyton Medlin, whose parents are Adam and Julie Medlin, has a rare and life-threatening genetic disorder called Complex I & III Mitochondrial Disease. “Mito,” as it’s called for short, is a disorder that occurs when the mitochondria of the cell cannot produce enough energy for cell or organ function. Mitochondria generate the majority of the energy required for cell function and the defects in mitochondria can lead to cell injury and death. At this time, there is no cure.
The Medlins, attendees of Northview Church’s Carmel campus, were living in Arizona when they received the devastating news about Peyton. She was 18 months old. After searching for help, treatment, and direction from some of the top specialists in country, the Medlins found hope at Riley Hospital in Indianapolis.
“As Peyton’s health continued to decline and with our frustrations escalating in Arizona, I turned to the internet where I devoted hundreds of hours researching and communicating with specialists, support groups and other families walking in similar circumstances, and inquiring about medical facilities that would best meet our daughter’s medical needs,” Julie said.
“It was at this crossroad when Adam and I discovered the unique and unmatched coordination of care found at Riley Hospital for Children and its supportive measures this facility provides through their Mitochondrial Genetics Clinic. Adam and I weighed the advantages and disadvantages as we knew we would be leaving our families, friends and church home, along with a support system we so deeply cherished,” she said. “But, putting our emotions aside, we also knew it would be in the best interest of Peyton.”
In December 2009, Julie and Peyton moved to Indianapolis so that they could prepare for an upcoming surgery needed for Peyton. Adam continued employment in Arizona, and then joined his family four painstaking months later. The Medlins learned about Northview Church during this extremely difficult time in their lives.
“It was through the grace of God that brought us to Northview,” Julie said. “Our former pastor at Heights Church in Prescott, AZ recommended Northview and one phone call later, we were connected to an outreach team who assisted us during this stressful transition. It didn’t take long for ‘our story’ to spread throughout Northview, encompassing support from Doug Kizer, Shanna Banks, Joe and Meri Boosel, and Sandy Ergott.”
Peyton has suffered 51 hospitalizations, four major surgeries, and countless tests and diagnostic procedures. Most recently she lost her colon and bladder due to the progression of the disease, resulting in two separate ostomies. She is not able to digest food and is completely dependent upon TPN (IV nutrition), which requires a central line to be surgically placed in her chest.
When asked what word summed up their experience, Julie replied “sentry” and referenced 1 Thessalonians 5:8. Julie explained how this applies to their lives.
“As I reflect back to the question at hand, a specific word that best describes our personal circumstances is that of the word ‘sentry’. A watchman with no retreat, always on guard and always ready for the next fight,” she said. “Fighting off exhaustion caused from countless sleepless nights, and the stress associated with providing round the clock medical care… at times it can make the mind feel a bit numb.
“When you plan to start a family, as a parent I think it’s one of those situations you never, ever imagine yourself being in. When you have children, you believe you’ll have a perfect, normal and healthy baby with a perfect, normal and healthy life. And for us that perfect, normal life simply took a different course.”
Some have asked the Medlins how they do it.
“How would I not do it?” Julie answered. “I compare it to being on a roller coaster ride that I didn’t ask to get on…there are a lot of ups and downs. Just when you think things are running smooth, you easily run into a brick wall, where you find yourself picking up the pieces, getting right back on the ride.”
“Adam and Julie are incredible parents with an amazing faith,” said Doug Kizer, Northview pastoral care pastor. “Julie is extremely organized and very knowledgeable about Peyton’s medications and treatments.
“Parents of a chronically ill child have an entirely different life than most of us experience. A simple trip to the grocery store is a real ordeal.”
“I wish I could be normal like everyone else,” Peyton told her parents one night.
“God doesn’t want us to be ‘normal.’ Normal is to be the same,” Julie replied. “We are perfect in God’s eyes and that is all that matters.
“I went on to tell her that she is far from normal and that is a good thing. Her life and how she responds to it makes her stand out among everyone else. People admire her courage and strength. I reminded her that while she may not be able to eat like other kids or play sports like they do and, yes, have pumps going off from time to time, there is far more to life than that!”
“When people look at Peyton, they do not see all these things,” Julie added. “They see a beautiful little girl who loves princesses and Barbie and life! They see a little girl who starts to dance whenever she hears music. They see a child that is compassionate, kind and loving. People love Peyton because she is amazing, and her smile can warm even the coldest of days.
“That is what I see when I look at my little girl. While I wish and pray that she would be healed, I pray harder that God will always be near her, guiding her along the way, as he has done with us.”
When you see the Medlin family at church, say hello. They are a special family, and Peyton is quick with a smile, so give her one back.
The Medlin family’s story appeared via video broadcast during Lead Pastor Steve Poe’s sermon on April 21 and 22 called “The Suffering,” part of a six week series called “The Broken.” This weekend’s sermon is “The Depressed.” For more information or to view a video of one of the previous sermons, please go to http://www.nvcl.org/?p=191.by