Every parent prays that when their baby is born, the child is healthy and normal. They pray for no abnormalities, no conditions. All we want is 10 fingers, 10 toes and a healthy set of lungs. On June 9, 2012 my husband and I welcomed our baby girl, Rhylie Ray. She was born prematurely and had to stay in the hospital for two more weeks. Other than that, Rhylie was perfectly healthy and normal.
In December of 2014, I one day noticed small knots on Rhylie’s legs. Not knowing what they were, we took Rhylie to her pediatrician. The doctor told my husband and I that the knots were the result of Rhylie falling. We knew this wasn’t true, so we continued to monitor Rhylie and the small knots on her legs.
One Saturday morning, about to run our daily errands, Rhylie couldn’t walk. She began crying saying her legs were hurting. We rushed her to the emergency room and the doctor’s performed X-Rays. The doctors said that Rhylie might have Dermatomyositis, which is a rare inflammatory disease that causes muscle weakness and skin rashes. The cause of Dermatomyositis is unknown, but the disease has much in common with autoimmune disorders, in which your immune system mistakenly attacks your body tissues. The doctor could not be sure that this is what Rhylie had until an MRI and blood work was performed. He referred us to Vanderbilt Children’s Hospital, located in Nashville, Tennessee. It is about 3 and a half hours from our hometown of Memphis, Tennessee, but the travel would be worth it to find out what was happening with our baby girl. Plus, the ER doctor said the doctors at Vanderbilt would be the best at treating Rhylie if she had the illness.
We went to her pediatrician for the referral, who still believed Rhylie did not have Dermatomyositis, but we insisted on the referral, followed our God given instinct and made the appointment with Vanderbilt. It would take the hospital nearly two months before they could see our daughter, so we were provided advice on how to care for Rhylie and the pain until she could be seen.
The appointment day had finally arrived and we were so nervous and anxious. We prayed to God for strength, clarity, and guidance on whatever we found out about Rhylie and why she was in so much pain. As the doctor from Vanderbilt entered the room, she took one look at Rhylie and said she could tell Rhylie was healthy just by looking at her and it doesn’t look like anything is wrong. She started to examine Rhylie and discovered that one of her legs was not straight and couldn’t be straightened out. The doctor became concerned and scheduled our daughter’s blood work for that day and her MRI for the following day. A week after Rhylie’s examination, May 2015, I received the call with her results at work. The diagnosis, without a doubt, was Dermatomyositis. We were devastated. We were told her condition was in its worst state and she would need to start treatments soon. The treatments would be every month and for 3 days every two weeks. In addition to this, she would take a daily steroid, and a chemo drug called methotrexate, which consists of 6 pills at one time once a week. She would wear leg braces for about a year because her feet had turned outwards instead of being straight.
The road hasn’t been easy, but I thank God that it’s not worse. Rhylie’s legs are better than they were in the beginning and she no longer wears braces. Her condition has shown some improvement. Throughout this entire process, we’ve had God bless us with prayer warriors and supporters. He’s given us traveling grace and mercy on the countless trips from Memphis to Nashville to get our child to Vanderbilt Children’s Hospital for treatments. In March of 2016, the Make a Wish foundation sent us on a paid in full Disney Cruise. Rhylie enjoyed herself and she can’t stop talking about it. I was once so devastated and would ask why God chose my baby to go through this. And I would hear a voice say “Why Not?” In spite of the pain, the sleepless nights, the worry, God has blessed us in a mighty way.
When it comes to your children remember to trust your God given instinct when you feel something isn’t right. If you are getting hesitation from doctors, get a second opinion. It is your right, your privilege to love and care for your children. If you don’t get anything else from reading this, remember again to follow your God given instinct.
My goal is to raise money for Rhylie to enjoy another Disney Cruise. She has gotten older and her condition has improved. She would be able to fully enjoy the trip and do more activities. She’s even picked up horseback riding as a hobby and has really taken to it. She’s a fighter and has been very strong throughout this experience. Going through this as parents has been emotional and depressing at times, but Rhylie has never given up. We get our strength from God and her and we won’t give up either.