Some of you may know that for the last seven or so years, my youngest sister, Moriah, has suffered from severe health issues that have worsened over the last two or so years. She has seen several different providers in the Midwest, even making 4-5 trips a year to a specialist in Houston. However, oftentimes, these providers could not help her or even diagnose her with anything specific. Late 2024, she spent almost a week in the hospital and finally got a POTS diagnosis, but still couldn’t find a specialist to treat her. She received an MCAS diagnosis shortly after that. She has been pursuing a functional medicine approach locally in treating these two conditions with little improvement. However, we knew that there was at least one other condition that had yet to be diagnosed because several of her symptoms didn’t really align with either of these diagnoses. We have been trying to get her in to be seen by specialists all over the country with no success.
My mom was finally able to get her in with a specialist at the Center for Complex Conditions in Rhode Island. My mom, Moriah, and I traveled there at the beginning of February and spent a few days there meeting with him. We honestly didn’t know what to expect because of the track record so far with providers being unable to help her. We spent several hours face-to-face with him going through Moriah’s entire medical history timeline, all of her symptoms, and he did a full physical evaluation. He stated that none of her symptoms were a mystery and that he had a diagnosis that tied to each symptom.
This alone is an answer to our prayers after so many years of hearing, 'we can’t help you, we don’t know what’s wrong,' or just simply dismissing Moriah altogether. For someone to actually take the time and say this all makes sense, and also, I have a treatment plan for you, was so refreshing. We spent almost two hours just going through each of her diagnoses, and he laid out a rough draft of a treatment plan for each. In addition to confirming the POTS and MCAS diagnoses, he also confirmed our suspicions of an hEDS and MALS diagnosis. She was also diagnosed with Cervical Medullary Syndrome, Eagle Syndrome, Tethered Cord Syndrome, Basilar Invagination Syndrome, and Empty Sella Syndrome.
She needs three surgeries. One of the conditions, Cervical Medullary Syndrome, is so rare that there is only one specialist in the world who does the surgery she needs. Thankfully, he is located near NYC. We do not know how long this stay will be, and most likely, there will be two different trips as there are several invasive tests they will need to do before considering her a candidate for this surgery. We are anticipating a few months' stay for this surgery. We are hopeful that this surgeon will be able to do the Tethered Cord Surgery as well.
The MALS specialist is in Connecticut. It will involve an almost month-long stay through all post-op appointments. Mom, Moriah, and I are headed to Connecticut next week for a procedure to confirm if she is a candidate for the surgery and to meet with the specialist. We are praying she is a candidate and that we can proceed with scheduling the surgery and preparing for temporarily relocating to Connecticut for a month.
The specialist at the Center for Complex Conditions was very impressed with Moriah’s pain tolerance and perseverance, as even one of the three conditions she needs surgery for usually has the patient bedridden 24/7 due to the severe debilitating pain each causes. He let us know that this will be a long journey, but the hope is that in 2-3 years, Moriah has more good days than bad, and that even the bad days aren’t anywhere near as bad as they are currently. That is all we can ask for, a better quality of life. We figured it was time to share this journey. So, this will be the place we will provide all the updates as we embark on this journey. Each surgery will be a lengthy process of referrals, tests, and travel.
If you know my parents, you know they are some of the most generous people, and Moriah freely gives of her time and the little energy she does have to others, including being my children’s nanny. Despite my parents' protests, I am providing a link if you wish to donate in some way. The most important thing I am asking for is for you to join us in praying for this process, for Moriah, for the providers, for healing. Specifically, I am going to be fasting and praying in preparation for our trip next week, Thursday, April 16th; if you would like to join me, please do so. We truly believe in the power of prayer, of healing, and the power of the community of Christ surrounding us in love and prayer on this difficult journey.