Hello everyone,
I continue to be overwhelmed by God's amazing grace and His perfect plan for our lives! He is moving in such mighty ways, still, through the Woman's World article as well as our website. God is answering our prayers (thank you) and continues to bless us by allowing us to be a part of His plan.
I received an email from a mom, Heather, a few weeks ago. Her son, Cal, was diagnosed with Athetoid Cerebral Palsy in 2004. Cal will be 5 years old in October. Since the diagnosis he has gotten progressively worse. He now cannot speak, walk, eat, etc. They eventually placed him on a feeding tube and he started having seizures a few weeks ago. Cal was down to 29 pounds in May and they were quickly losing him. Heather took him to the hospital and told the doctors she wasn't leaving until someone would help her son and tell her what was going on. Six days before she emailed me, her neurologist said Cal may have DRD (what Noah and Alexis have). Heather was uncertain of trying him on the medication due to the new onset of seizures and the side effects of the medication. She was in prayer, asking God to help her, when she was led back to research. She came across our website and listened to the Mother's Day Sermon, where I spoke to our congregation and shared our story. She was already scheduled to go to a conference in St. Louis where Dr. Brunstrom was speaking, in my message I mention Dr. Brunstrom's name. She was also led to Dr. Fink through a friend of her uncle's friend, after her neurologist said Cal may have DRD. I mentioned Dr. Fink's name in the message. She said when she heard the two names and watched the video of the kids on our website, she knew God had led her there. She also said in her email "Retta, I have to tell you that I have not been the strongest of believers in miracles or in God's work for that matter. In short, I was a cynic until recently." She told me that she knows God is showing her how to proceed. I called her, talked to her, prayed with her and am waiting to hear how God continues to lead her. Please join me in praying for healing for Cal and continued guidance and awakening for Heather and her husband Cody. Praise God for the way He works in all the details and guides us so clearly!
Please continue to pray for Nicholas, Melinda's son. He continues to improve with the medication, but she is having a hard time finding neurologists who know a lot about Dystonia. Pray for guidance, direction and peace for their family.
I spoke with another mom today from Canada. Her name is Nidia and her daughter is Megan. Nydia's mother-in-law recently brought her a copy of the Woman's World article. Megan is 6 years old, is non-verbal, in a wheel chair and can't sit on her own. She has been misdiagnosed several times and the most recent diagnosis is a form of Cerebral Palsy. Nydia doesn't feel confident in the medical care Megan is receiving. After sharing a lot of information, I don't feel strongly that Megan is a candidate for DRD. However, I know that Noah wasn't in the beginning either. I did give her Dr. Brunstrom's phone number as she is the pediatric Neurologist at the Cerebral Palsy clinic in St. Louis. I believe Dr. Brunstrom could help them with Megan's diagnosis. After talking to Nydia, I knew that God's timing was perfect as she needed some words of encouragement, hope and understanding, and I believe God met her right where she was at today. We spoke for about an hour and God gave me the opportunity to pray with her, what a blessing! Please pray for direction for Nydia and John, that God would reveal to them what is really going on with Megan. Pray for healing, pray for peace, comfort, resources and for them to continue to lean on Him for all their needs. Pray that God would strengthen their family through all of the challenges they are going through.
I checked our website today and found the following posting (I copied and pasted it below)
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THANK YOU FOR OPENING MY EYES!
Posted: Sunday, August 06, 2006 4:34 PM (EST)
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Thank you for the Woman's World article, which has opened my eyes and given hope to so many. I was diagnosed with CP at 18 months old in 1969, when there were "no tests". I knew I did not fit the CP mold and was nothing like the other children I saw. I had so many surgeries and went through so much pain. I told my doctor, I did not think I had CP. He said, "You are the patient, I am the doctor and you are questioning me." I replied, "Absolutely, I pay YOU remember." I have had people tell me I did not have CP and thought I was joking when I told them that was my "official diagnosis". One thing I did not have was the "classical humped feet" among other things. I have had tremors for years but they were never given a diagnosis. When I asked questions, I was scolded or told, "You just have CP"! I know I have a medical condition and after your article I am headed in a new direction. Also, my Dad's whose hands have tremored for 25 years has just been diagnosed with "hereditary tremors", Mom has tremors too and so did my paternal grandfather. My cousin, who committed suicide in 1991, had severe Parkinson's disease but the Parkinson's disease was kept a family secret until I mentioned the Dystonia article to another relative and asked for his family's medical history. I have found doctor who want me to put information together for them to read and I will gladly do so. Where did you get the information packet about Dystonia mimics CP that turned your kids lives around Ms. Beery? I am informing many people in different states about your research and website. Thank you for opening all our eyes. May the Divine Physician Bless you and your family with His Infinite Blessings!
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The lady's name is Mary Cate and I emailed her my phone number and email address. This is a huge answer to prayer as DRD is highly hereditary, the drug Noah and Alexis take is used for Parkinson's, the tremors fit, etc. There is also a high suicide rate in patients with Dystonia as the disorder continues to progress and you lose abilities to function. Please pray that God will guide her and her entire family in their journey. Pray that He would use me as His vessel if they need information, prayer, direction, encouragement, etc. Pray that we would be able to hear the details of their story as they unfold as well as the end results.
Thank you for your prayers, they are being answered in amazing ways! Thank you for your encouragement, your friendships, your hearts! We are overwhelmed by all of the support each of you have given to our family. We love you!
Retta, Joe, Zach, Noah and Alexis