Stand with Trina: Overcoming VEDS Challenges

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Tonya Moore and Trina Goodloe are organizing this fundraiser.

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On January 1, 2024, my sister, Trina, had a heart attack. While in the hospital, she underwent a heart cath that revealed multiple blockages in the arteries of her heart. Her medical team began preparing for a coronary artery bypass surgery (CABG).

However, Trina has Vascular Ehlers-Danlos Syndrome (VEDS), a rare, dangerous connective tissue disorder with no cure. Trina has the most serious form of Ehlers-Danlos Syndrome (EDS) that places her at high risk of arterial or organ rupture.

In an emergency situation like Trina's, it's extremely important for her medical team to fully understand the fragility of her vessels. Fortunately, her cardiologist was open to hearing our concerns and calling our specialist in Houston to consult. This was the day before her surgery was scheduled.

We were terrified... A little background, VEDS is a heritable genetic disorder, meaning it is inherited. In our case, I was the first genetically identified person in our family to have VEDS. Our father died from arterial ruptures and had a history of heart attack and bypass. Most likely, our father carried this gene.

After the consultation between doctors, Trina's surgery was canceled. Her treatment plan was to stabilize her and then follow up in Houston with our doctor.

Our Houston cardiologist is the most amazing doctor. He has held my hand for years through my own journey, and he was ready to jump in and advocate for Trina. Finding a cardiologist or vascular surgeon who has expertise in VEDS is extremely difficult. Our doctor is a researcher as well as a practicing cardiologist. He teaches at McGovern Medical School UTHealth. People come from around the world to see him. Additionally, UTHealth partners with Memorial Hermann - Texas Medical Center. They have specialized MRA machines and other surgical equipment to use on VEDS patients.

Trina was diagnosed with VEDS about a year ago. This disease progressively worsens with age. Not only are the vessels, especially the arteries, affected, but every place connective tissue exists as well--which is all throughout the body. The video below explains this issue really well.

Chronic fatigue, musculoskeletal pain, neuropathic pain, joint pain, joint subluxations and dislocations, gastroenterological problems, POTS, and MCAS are all symptoms. I've watched as Trina has struggled working because of the physical pain, brain fog, and fatigue. Over the last year, she has worked less and less as the symptoms overwhelm her health. She has lost her income along with her insurance.

Trina has filed for Social Security Disability and the benefits that come with it, but approval takes a long time.

Trina lost her home after losing her income. My heart breaks for her daily. But Trina still smiles. She holds tight to her faith in God and praises Him every day. She gives thanks to Him for intervening at the hospital. She is faithful that the money to pay for her treatment in Houston will come through. And I'm here to let God work through my efforts to get her treatment. I also believe God will show us both that we are in the palm of His hand through this disabling, devastating disease. I am asking for your help and prayers, too.

Here's where you come in. Trina needs to travel to Houston as soon as possible. We are unsure how long she will need to be there at this time. We will have to pay for travel expenses like hotel, gas, and food costs. There will be tests and doctor visits. I am asking that you consider donating to help with these costs. All donations are welcome, even if it's $5!

I am organizing and managing her care in Houston so that she can focus on recovery and prevention of any new vascular events. I've been able to look at costs based on tests that I've had. Without insurance, the MRAs and echocardiograms cost $27,064.80. I am working on discounts for uninsured payers.

Trina also has to pay for her medications, car payment, insurance, etc. Now that Trina is not working PRN, she does not have money to pay these expenses.

A donation of $25 will help pay for her monthly medications.

Trina has impacted so many people's lives through her testimonies of God's work in her life. She's been a friend to many in need. She's quick to share Jesus, and even quicker to pray for others. I've seen her take Depends and other supplies to work at a nursing home/rehabilitation center when administration wouldn't spend the money to buy enough. I've seen her buy CNA and nurse appreciation gifts when administration hasn't recognized these important workers. Trina gives of herself as no other. She took care of our mother as she aged. She doesn't gossip. (That's always impressed me!) Trina has a fun spirit and is never afraid to be silly! We have had so much fun over the years and we both want many more!

Thank you for reading this far! I will be providing updates along the journey...

Sincerely,

Tonya Moore, Trina's biggest advocate and little sister