A year ago when Logan was diagnosed with Cerebral Palsy we were devastated, but we were also grateful Logan would finally get the help he needed to learn coping skills to help him lead the most “normal” life possible. What is “normal” anyway? It was some closure to a year long struggle. We finally felt like we had answers to what the future would hold for our sweet little boy. As the year went on we began to accept his diagnosis and the fact that he was always going to have special needs. We knew Logan would have many challenges ahead of him, but we also knew we would work hard as a family to help him overcome his disability. We started extensive therapy and I began diligently working with him at home. Logan has made remarkable improvements and hit milestones that have even surprised his therapists.
You can imagine the shock when the same Neurologist that gave us a second opinion and confirmed Logan’s Hemiplegic Cerebral Palsy diagnosis a year ago suggested, “There may be a “cure all” medication for Logan, he may have been misdiagnosed with CP, and he may have a rare condition called Dopa-Responsive Dystonia.” It was even more shocking as he continued to explain, “This may have nothing to do with the fact that Logan was premature and just a genetic condition that is very likely hereditary.” My mind began to race…………….all his rigidity, all his instability, all his lack of balance, all his tremors may be caused by DRD and it could all be gone with medication? He may be able to run without an abnormal gait, he may be able to walk with ease, and there may be no struggle to eat or write or put together puzzles? All the questions and joyous thoughts began running through my mind as I sat in the doctor’s office stunned by this encouraging, yet baffling news. Genetic? Hereditary ? What? This played over and over in my head as he so eloquently explained the details using his somewhat intimidating medical vocabulary. I felt like I was in a dream as he went on to explain he wants to do a spinal tap, another MRI, and some chromosomal blood work just to confirm. It all sounded so scary, especially the part about putting Logan under anesthesia for the procedures.
“How could my son have DRD if nobody in my family or my husband’s family has it?” I asked.
The doctor explained that only one parent has to have the gene and the gene carrier may or may not ever show symptoms of the disease. DRD is so extremely rare that only about 1 in a 1000 children seen by a neurologist has this condition. Many DRD patients are misdiagnosed as CP and never tested. The fact that Logan is being tested for DRD at such a young age is a blessing in itself, as many are not diagnosed until age 8-10 when their symptoms have worsened from not being properly treated. DRD is so rare that I have only met one other individual in the medical field that has even heard of this condition. The only reason I had heard of DRD was because I briefly read about it online (being the Google queen that I am) after panicking when Logan’s first physical therapist suggested he go see a hereditary disease specialist. At the time, we were so scared just hearing the words “hereditary disease” and so “sure” she was wrong in her thinking that we chose to take him to the referred neurologist for a second opinion instead. Praise God she had the foresight to refer us to a neurologist she knew had experience with DRD patients. Even though she never specifically used the words Dopa-Responsive Dystonia, as she is legally not allowed to diagnose, I have to believe that this is what she was referring to when she suggested we consider looking into the possibility of a rare genetic dystonic condition. God is always working behind the scenes and I am confident that He specifically chose her to get us to the best pediatric neurologist.
At the time, we were so confident Logan’s developmental delays and medical issues were due to his prematurity that we did not think it would be wise to just dismiss what seemed to be a logical explanation to consider a hereditary condition. The beautiful thing about this whole story is, had Logan not been born 11 weeks early, and had the issues he did, he would not have gotten the quality of care he has had over the past two years. The reality is we may have never known he might have this extremely rare condition that only the most informed and specialized doctors know exists. Coincidence? I think NOT! God’s sovereign plan? Most defiantly! His plan was so much bigger than my brain could ever imagine! Or as our pastor would say, “Some things are just too big for your suitcase.” I just can’t wrap my mind around how perfectly the past two years circumstances have all come together to create one HUGE miracle. As I sit here and type what he has done for our family, I am in awe of his all knowing, all powerful blessings, and I am humbled by his love for us. It is so incredible how he has worked out every detail of every day. This is just too much to believe. Yes, too much…………… But, I believe! I believe it, I hope for it, and I have faith that our Lord Jesus Christ will heal our son! I truly believe in this miracle and I BOLDLY praise and thank God in advance for healing Logan’s little body. I cling to Hebrews 11:1 and Ephesians 3:20.
Hebrews 11:1- Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see.Ephesians 3:20- Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us
I consider just the possibility of a misdiagnosis alone to be a miracle. This is a second chance I never felt would be possible……A second chance I was fine without having. Friends, we must NEVER forget that with God, ALL things are possible! Next time you are discouraged when your prayer is not answered as you wish, I encourage you to take heart in the fact that it is possible His answer is only “no” for now. So often we get wrapped up in the fact that we are not getting what we want right then, that we forget God has a plan and it is all in His time. He may be working on you as a person, and simply answering your prayer with a “yes” immediately may not be in your best interest long-term. He knows exactly what you can handle and he knows when the best time for you to receive a blessing. I have learned there is not always a definite “yes” or “no” answer. So often we forget he also answers with, “wait”. Psalm 46:10, “Be still and know that I am God” comes to mind.
If we hadn’t experienced this past year the way we did…………..Oh, how much we would have missed! We would not have experienced the grace and the peace that only Jesus Christ can give to those who have a child with a chronic disease. I both accept and embrace the fact that CP may still be Logan’s diagnosis, however; I also have faith that he will be healed through Jesus Christ. We BELIEVE! I am so excited to finally have some answers this week. I am sure the test results will take longer than this week, but I am ready to start the process. We truly believe there is a miracle to come. Wow….that was therapeutic. Thanks for listening……………….I will keep you posted on his status. Please keep us in your prayers. I leave you with a verse that means more to our family than ever before.James 1:2-4- Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.
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