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How Miracle Flights Help Us Roll With My Son's Rare Disease

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I remember hanging on to the toes of my mother as she died. Her battle with cancer was coming to an end and I felt the need to tell her who all was in the room. My voice was close to a yell. ”Dad’s here, Paw Paw’s here, Me Maw’s here and I’m here!” I went on to tell my mother that it was OK. That she could go. I was 22 years old and I was granting my mother permission to die. Like what I said had any effect on how things were going to play out that day. I had no control. I was just rolling with it.

Fast forward 14 years later, as I sat on edge of a hospital chair listening to the doctor say that my child, Levi, was probably going to die. He was only 8 days old. I did everything right during my pregnancy. How could this be happening to us? I do not remember much from that day after the doctor talked to us. I zoned out shortly after he said, “…if this is the case, there is nothing we can do.”

What do you mean, nothing you can do? You are a doctor! Doctors fix patients. I don’t know if this did not sit well with me because I was a nurse or because I was a mother. But either way, my husband, a registered respiratory therapist, and I went home and did research on what they thought Levi had. We talked about it and decided together. If this is what he has, he is going to die at home with us and his sisters. The ball was officially back in our court as we rolled with it.

Long story short, that doctor was wrong. I was using special feeders to feed my son every two hours and he was hanging in there. It would not be until his first birthday that a doctor at a different hospital would question yet another possible diagnosis. At this point, we had already had two misdiagnoses. When the doctor entered the hospital room and kindly asked me to sit down, I thought, “Here we go again.”

He said, “Your son has Jansen’s metaphyseal chondrodysplasia.”

My response was, “Are you sure?”

He said, “Yes. I sent two different vials of blood to confirm it.” It had been genetically confirmed. But I had never heard of this condition and I was a nurse.

He went on to tell me that it was a very rare disease. At the time of my son’s diagnosis in 2007, he was one of 17 cases worldwide. Let that sink in. I had a ton of questions he could not answer. All he could tell me was that it was a type of degenerative, debilitating dwarfism. My son was going to be in pain. This was information I could not roll with.

The more research I did on my son’s ultra rare disease, the more I realized I was just rereading the same handful of articles reposted on different sites. The little bit of information I found was terrifying. It was hard to roll with. I realized I was going to have to share my son’s journey, pictures and information if I wanted to help future parents of children with JMC.

I also knew I had to find a doctor who had treated a patient with this condition. I had to find a doctor who would have an idea of what to do. I was a mother on a mission to get the best possible outcome for her child. It took a while, but we finally found that doctor. He was in Chicago, Illinois, and we lived in Ocean Springs, Mississippi.

We started flying up to Chicago from Mississippi when my son was only 18 months old. The doctor was great. He had some ideas on a treatment plan that would help my son get the best possible outcome since there was no cure for his condition. We were flying up to Chicago every six to eight weeks for IV treatments. We quickly depleted our savings account and maxed out our credit cards. Worry set in. We knew where to take him for treatment, but we were running out of the funds to get him there.

Then one stressful night, lack of sleep yielded a 2 a.m. internet search find that changed my worry into instant tears of hope and joy. It had been a long time since I had cried happy tears, but I just could not stop the tears of relief from streaming down my face. “Miracle Flights” will forever be etched in my mind with that joyful moment. We finally had a way to get him to out-of-state medical care, and it felt great! I could once again roll with it.

Miracle Flights celebrated their 100k flight in June 2016.
Miracle Flights celebrated their 100k flight in June 2016.

My son Levi is now 11 years old. Miracle Flights has provided him with 15 flights for medical trips so far. In June 2016, my son was Miracle Flights’ 100,000th flyer. Our family was grateful to help Miracle Flights celebrate this huge milestone. There is no way we could have done it without the help of Miracle Flights. Although my son will forever be under a doctor’s care and there is still no cure for his condition, we know that Miracle Flights will continue to help him get to the distant medical care as he needs. Unlike other children his age with his condition, he is able to walk, and I believe he has a better quality of life because of Miracle Flights.

If I could share just one thing with any other parent going through a rare disease diagnosis, I would tell them about Miracle Flights. Chances are, those families will have to travel to distant specialized medical care. They already have so much to deal with. Miracle Flights is a great resource for those who qualify.

It’s amazing what a 2 a.m. internet search did for our child; it allowed us to find him a way!

— Dona Krystosek, RN
Family Advocate, Miracle Flights

Learn more at Miracle Flights.

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Originally published: April 5, 2017
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