Help Jordan Overcome Rare Diseases

This is my granddaughter, Jordan. We live in Temple,TX. She is only 19 years old yet has been dealing with rare diseases and disorders her entire life. She has insurance, but the doctor who does the surgeries she desperately needs is out of network. So, I am turning to our community for help. I am starting this Go Fund Me in hopes that there are kind people out there who will help me help her. This is her story:

Please keep in mind that a diagnosis doesn't happen instantly, especially rare diagnoses for children. Most people, like Jordan, suffer for years without answers. Once answers are found, treatment can sometimes still be months or years away.

At the tender age of 12, Jordan was diagnosed with narcolepsy with cataplexy. Sleepless nights and exhausting days meant she has also battled anxiety and depression since she was little. The fatigue that comes with this diagnosis meant it would take almost another 6 years to find the major issues because the doctors kept saying "it's just anxiety" and "it's just the narcolepsy". It wasn't.

At 15, she was diagnosed with Juvenile Rheumatoid Arthritis. Sometimes, JRA resolves itself as kids age. The doctors assured us that taking the medicine would help and that only time would tell if it cured itself. So far, it hasn't. Again, the doctors said that the severe fatigue and pain were just caused by the JRA. But this didn't explain the chest pain and abdominal pain. It doesn't explain the nausea, and vomiting when she eats; or the fact that her legs are swollen and go numb.

At 17, she was diagnosed with POTS. Postural Orthostatic Tachycardia Syndrome. This diagnosis helped explain some of the "anxiety" symptoms. When your heart rate jumps through the roof every time you stand up, and then you feel extremely dizzy, and so far, there hasn't been a reason... you tend to worry more.

Unfortunately, so far, there is no cure for POTS, just symptom management. But, again, this still doesn't explain all her symptoms, so we kept searching for answers.

We found a doctor who would do a CT scan and a veinogram. Finally, some answers! The diagnoses:

Retroaortic Nutcracker Syndrome.

Median Arcuate Ligament Syndrome (MALS).

AND

May Thurner Syndrome in both legs.

These are venous compressions that interfere with blood flow. She's been suffering with these for so long that quite a few collateral veins have formed because her body is trying to "fix itself" to get the blood where it needs to go. It hasn't helped much. She is in constant pain every day. It's exhausting.

She doesn't get out much as she'd like, or as much as she could just a year ago. The slightest physical activity wears her out. She can't do things that most of us take for granted, like being able to simply walk through a store. She can't hold down a job.

This brings us to the reason we're here asking for help.

These compressions are rare. The doctors that treat them are few and far between. Most people have to go to a different doctor for each one. This would mean three different surgeries with three separate doctors. Some of whom aren't in our state.

Luckily, I've found a doctor in Maryland who understands all of Jordan's issues. He specializes in these rare vein compressions and is willing to take her on as a patient. Unfortunately, though, he is not in network; which means it will be expensive.

We are in Texas. We will have to travel to Maryland several times for: consultations, more testing, pre-op visits, the surgery itself (possibly multiple if he thinks that's best for her overall health), and post-op visits.

Insurance won't cover any travel related costs, such as: airfare, hotels, car rental / taxi / Uber, etc.

Her family is doing all they can to help. As much as it pains me to do so, I must turn to the kindness of strangers for help with the rest.

Please help me give my granddaughter a chance at a life worth living. Thank you.