She says it happened in slow motion, but her doctors say it was an accident waiting to happen. She describes a grinding sound as her head slid backwards as she turned to look over her shoulder at her three year old son, just like she did so many other times. Only this time, a ligament in her neck, then unknown to be weakened by a genetic defect she carried and the weight of her own head, snapped. Her head slid slowly around, and around, and around backwards, turning almost all the way around under its own weight. The top two vertebrae were dislocating, and she had no idea what was happening. Then she saw lights. She's not sure what happened next exactly, but the next several months were a nightmare of doctors, hospitals, and a life saving surgery to stabilize her neck and protect the arteries in her neck that were in danger of being severed should this happen again.
Miryam has suffered a long time with a mystery illness. After many years and many, many doctors, we've learned she has a genetic disorder called Ehlers-Danlos Syndrome. This disorder weakens the connective tissues in joints, internal organs, and skin, causing sudden joint dislocations, immune problems, difficulty eating, low blood pressure, and other debilitating problems. It's a painful, terrible thief of a disease that has robbed her of her mobility and ability to work, and she's only in her 30's with young children. On average, it takes years to get this disease and its complications correctly diagnosed. Her case is no different than average.
Just in the last few years, the complications of Miryam's disease have caused her to lose over 50 lbs, lose the ability to swallow normally, and required her to have several major operations. She's needed surgeries to release trapped nerves and to fuse the bones of her pelvis back together just so she can stand. She now walks with specially designed crutches that won't dislocate her fragile shoulders because normal ones would. In 2015, however, the worst happened. She dislocated the top of her neck at the first and second vertebrae, causing a spinal cord injury and permanent nerve damage that affects her voice, ability to swallow, hearing, and even her body's ability to control her heart rate. This was such a rare injury that we weren't given much hope for recovery, and paid out of pocket to see a neurosurgeon to be evaluated. Thank goodness, Miryam did have a successful surgery to have the injury stabilized, but she has been left permanently disabled.
Miryam has lost a lot in the last few years because of this disease. It took years just to diagnose it because it is rare and not many doctors even know what it is. There was a lot of damage done to her body because of the delays in treatment. What she hasn't lost is her spirit. If you've ever met her, Miryam is one of the strongest, most resilient souls you'll ever meet. She keeps pushing on, making the most of what energy and ability she has, giving her all to her 3 year old daughter and 5 year old son.
But she has given too much to this illness recently. Miryam can't work anymore, not since the neck dislocation. She's been judged to be 100% disabled, but social security hasn't kicked in for our family yet. We're told it could be at least another year for the process. The business that she ran helping mothers and babies as a doula and babywearing consultant had to close. She loved that job, but can't do it, not even from home. She takes more medications than I can count each day to stabilize her blood pressure, mast cells, digestive system, and nervous system. It's hard.
We finally have found some doctors who can help her, but some of them aren't covered by insurance. Others are out of town, and she has to travel on the family's budget to see them several times a year. They are doing her a lot of good. We finally have experts helping her, but it's expensive on one military income.
Your donation will help pay uncovered medical debt and future expenses, as well as for needed durable medical equipment like a wheelchair to improve Miryam's independence. The family lives now on a single military income; her husband is an active duty service member. Please help Miryam's family if you can, at least until Social Security steps in for this military family in need.