Jennifer Davis and family medical support fund!

Hi, my name is Tracy and I’m fundraising for my friend Jennifer Davis. Her story is one of suffering and hope, pain and endurance, exhaustion and commitment. You see, Jennifer is fighting a medical condition that there have been few answers for. Jen’s condition has led her to doctors all over the US. Doors have been opened, prayers answered, and insight given into a disease that doctors are trying to learn more about. It’s complicated, rare, and a journey of blind faith for Jen and her precious family. Through it all, Jen has remained steadfast in her role as wife, mother and follower of Jesus. She and her husband have diligently worked to protect their sweet children and to provide as much normalcy as possible. Her mind and her heart simply want more quality time with the people she loves. Jen’s body, however, is deteriorating and making it more and more difficult to do and be all the things she wants, hopes and longs for.

Here is a glimpse into Jen’s world and her recent medical update in her own words:

This first started four years ago with abnormal ekg’s and heart stress test. This was diagnosed as POTS (postural orthostatic tachycardia syndrome) but things continued to worsen. After seeing specialists at UPenn and Duke, I was also diagnosed with multiple vascular abnormalities, preload failure of the heart, and dysautonomia. I had a kidney auto transplant and iliac stent placed to help the vascular compressions but this led to further complications. After two right-sided exercise heart catherizations, this led to the doctors believing that I had some kind of abnormality with my muscles and the ability to extract and utilize oxygen. In May of 2022, we finally received the missing puzzle piece. The muscle biopsy showed that I have a progressive primary mitochondrial disease. The disease presentation and progression vary by individual but I’m currently fighting disease progression in several different parts of my body.

It’s been almost six months since I spent 2 weeks in California getting treatment. It was an amazing time of rest and spiritual growth. The only thing I had on my plate was treatments, rest, and healing. I had lots of time to think and pray about my life, my future and what I wanted it to look like when I got back. That ended up being the biggest gift I was given. After two weeks of treatments, we had a better idea of which treatments we would consider in the future: Plasmapharesis in an integrative setting and mitochondrial supportive IV infusions that bypass my GI system. But, as I shared a few months ago, we had to stop all treatments. There was no more funds and a weighty pile of debt from four years of trying to find answers, trying treatments and more treatments. We had exhausted every option that we had. And, I would do most everything again. It’s very difficult to put into words what this part of the journey has been like..I guess maybe I would describe it as feeling like you have an emergency every month for 4 years and there’s weighted consequences of stopping the pursuit of answers, or when you get answers-trying any treatment you can to fight for quality of life and slowing/stopping the progression. It’s been so hard to balance answers and treatment for me, with normal family of 6 bills/expenses.

Six months ago when I stopped treatment, I had hoped it wouldn’t be for forever, just for a little while.

I’m also facing hard things-really hard things: disease progression. This disease is a thief. Trying to steal my energy, my strength, my muscles, my organs, and my life. When my doctor shared last May what the disease course could be like, I was not a fan. I also held it all loosely because I am thankful for medicine, and it’s wisdom, but my ultimate trust and hope is in Him. He has the final say. And, I’ve never followed the course the doctors thought, so I’ve just believed my path would be different. And, in so many ways, it has been. I’ve been given the gift of perspective. I’ve shattered the “I can’t keep doing this” thought hundreds of times. I’ve overcome. I’ve lived and loved. When this has felt like it will swallow me up, the prayers of YOU have kept that from happening. But, my body is showing physical symptoms of disease progression. It feels so scary that I don’t even want to type it out. I still look mostly normal, but if you look in my eyes, you would see a tiredness that runs bone deep. If you look in my heart, you will see it broken over everything that should have been. If you really look, you’ll see a wife and mom who has given it everything she has…and she’s still left with a lot to overcome.

I’ve shared very little about how this disease can look because I refuse to give it power in my life. But, I’ve had a lot of genuine questions so I’m going to share a little more of what the doctors say. The doctors say there is no cure and depending on who you talk to, no worthwhile treatments. (none of them are covered by insurance) The doctors say they expect the exercise intolerance to worsen to the point that a full power wheelchair is needed. The doctors say significant hearing loss is expected. The doctors say that your eyes work by muscles and eye muscle weakness leads to paralysis of the eyes. The doctors say diaphragm weakness can occur which leads to respiratory failure. The doctors say that degenerative signs of the brain are common. The doctors say that organ failure begins to happen and leads to death. The disease course varies in intensity and length for each person. I do not have an exact timeline and I would refuse to accept it, if I did.

You can see the real battle I’m facing. I’m doing PT twice a week to try and strengthen my weakening muscles. My eyes, hands, and arms are all showing signs of disease progression. As I have worked with my PT, she has pieced together so much and the ways my body has tried to compensate for this. We are working hard together to prolong my quality of life and slow this muscle weakness/progression.

I am the rare case. For almost four years I have heard from the experts at amazing hospitals across the US “you have an incredibly complex case” “wow, this is so rare”. This is difficult. I didn’t wake up one day and think that I wanted to carve a new path and advocate for myself across all avenues of medicine. I didn’t ever think that this would be my path, but God has allowed it. He’s not the cause, but just like other people throughout history, He has allowed me to know suffering, pain, grief and loss at a very deep level. He has given me the strength to advocate for myself and form a team of doctors who also believe in me. I still believe there is a path of healing for me. It’s looking much different than I expected, but I do think healing is still possible.

~ Jen

I could go on for paragraphs about the things this sweet family has sacrificed, invested, and fought to provide to keep Jen as healthy as possible for as long as possible. They never ask for anything. Jen shares her heart on Facebook sometimes, and in the midst of suffering, she inspires and encourages everyone who knows her. God has given her a gift, and despite her suffering, she continues to share that gift with the world. Her hopes and dreams are the same as most mothers. She wants to do all the things, be at all the places and provide all the encouragement, while protecting her family. She wants anyone who knows her story to understand that she trusts God, His timing, and His story for her life. She has the hardest working husband who stands beside her, behind her, and holds her up when she’s lost the strength. They ask for nothing.

God has burdened my heart for Jen’s story for years (yes, this has been going on for YEARS). I pray for her daily. I keep waiting to see the post that boasts of God’s miraculous healing. But today, this precious family needs help with financial needs that can allow Jen to resume treatments that are not covered by Insurnace. They have a need to move to a one story home that is wheelchair accessible. They have years of medical bills that are more than any of us could absorb. They are humble servants of God and others, and they need our help. Will you consider giving to this sweet family. Any donation helps. Also, give Jen a follow on Facebook to learn more about what she’s struggling with and how you can pray for her! Thank you for any donation you can give and for praying for this family. ♥️