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*Renae has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses. HHL verifies medical & financial need.* (Click “See All” for Renae’s story.)
Renae is a 47 year old musician, artist, and former teacher who has been living with several rare conditions that are incredibly difficult to treat. (See list below.) She does not have access to the highly specialized care she needs in Arkansas and needs your help to see an out of state team of specialists and get a service dog.
Renae taught in NYC schools, completed grad school at night, and raised two kids as a single mom. After moving back to Arkansas, her health began to affect her ability to teach. By 2016, she stepped down to subbing, but her conditions worsened. In 2020, her symptoms became debilitating with the addition of Long COVID. Since then, misdiagnoses and inappropriate treatments have made things worse.
On 8/3/24, after a POTS episode, Renae woke up on the floor with a head wound, broken teeth, and a fractured nose. She hopes that with proper care she will improve enough to pick up her infant grandson without worrying about passing out. A service dog would be a huge help that would allow her to remain living independently and safely, as long as possible.
While Renae is hopeful this new care team at Cleveland Clinic can help, she faces major financial barriers. The specialists, tests, and treatments will all be out of pocket, as well as travel, lodging, and basic needs. ALL contributions are deeply appreciated!
Medical Conditions:
Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder that affects multiple body systems.
Postural Orthostatic Tachycardia Syndrome (POTS) causes racing heart and sudden blood pressure spikes and drops that can lead to fainting and injuries.
Mast Cell Activation Syndrome (MCAS) is an autoimmune condition that manifests throughout the body in a variety of ways, such as hives. It’s also responsible for medication and food sensitivities which add challenges.
Hashimoto’s is an autoimmune disease that affects thyroid (and therefore the entire body).
Cervical Dystonia is a neurological disorder that causes uncontrollable movements and is horribly painful. This may also be contributing to her occasional dysphagia, dysphonia, and problems walking.
Degenerative Disc Disease is a severe and painful arthritic condition causing cervical instability which requires neck surgery at this stage.
Eagles’ Syndrome is an elongated Styloid process (side of neck) which leads to calcification of the temporal bone, inflammation, stiffness, severe pain, and eventually can cause stroke. (Renae suffered two TIA’s with COVID.) Surgery is needed.
MTHFR is a genetic mutation that causes malabsorption of B12 and other crucial vitamins, leading to chronic fatigue and more.
Factor V Leiden is a genetic blood clotting disorder that increases stroke risk.
Epilepsy was diagnosed due to increased occurrence and severity of seizures, but the underlying cause is not yet known.
Long COVID is still being studied and is known to cause POTS, which Renae already had.
***It’s not surprising her conditions have become so advanced or that her case has become unmanageable without a team approach that simply is not available in Arkansas.***
Hey folks! I've been having more seizures and episodes which are pretty scary. Had a bad one in public a few weeks ago that did a number on my neck, which you may already know has several issues we're already struggling to find adequate treatment/surgery for. The seizure caused lots of painful popping in the worst parts of my neck, followed by severe swelling for a while. I'm hoping we can get meds adjusted and calm down these episodes, but I am actively searching for a service dog to help me stay as independent as possible. It's important for my mental and physical health to try to stay as active and social as possible, so I hope to have the funds available for a service dog and/or the training when I find a suitable doggo. There is one I'm planning to meet and have assessed very soon, but I need to raise funds for training before adopting him. Please, help me spread the word! Thank you!
The Jazzy Paint Party was a ton of fun and gave us lots of ideas for future fundraising events. Folks are excited about mom hosting a collage making party soon. We're still learning how to do this stuff, and I am so grateful for all the help and for each person who showed up, contributed time and talent, and who donated. Check out the photos in the gallery.
Finally made it to Cleveland Clinic last week! Was only able to see the Internist for this first visit, but we were able to prioritize some things and work on the game plan. I was so impressed with the doctor and am hopeful they will be able to help me. I have a long way to go, but it feels so good to have some movement forward after being stuck for so long! Thank you to everyone who contributed!!! ❤️
Officially registered as a patient at Cleveland Clinic today!!! Still can't use state funded insurance outside the state, so as soon as we raise enough I will *finally* get to see a team of specialists, including for MCAS!!! That's the diagnosis that knocked me out of going to Mayo, as it's on a list of six conditions they don't want to mess with - even if you have the money in hand.I cannot get there soon enough, because the weird interplay between these conditions is getting much worse, to the degree it's getting to be pointless trying to leave the house. The neck spasms and head movements might be fine when I leave, but literally two minutes in Walmart triggers episodes so extreme I can't walk myself out or drive home. The photosensitivity is absolutely out of control. Which makes it really problematic being home and needing to take care of everything online. Like right now as I type this. The primary mode of socialization is online for me now, too, but often I can't talk to people even though I want to. I have to choose between being isolated or having symptoms flare from the screen light.Sometimes, even the tiniest movement forward is enough to restore my hope. After zero sleep last night due to neck pain and the effects of the screen light, getting registered with Cleveland Clinic today gave me the encouragement I needed. That wouldn't mean anything without this fundraiser, though. Thank you for living up to your name Help Hope Live! Thanks to everyone who contributes and spreads the word! And thank you, Stacia for being the BEST coordinator ever! You are true life savers.
Renae here. I meant to just postpone the procedure for the heart monitor implant this week until after Thanksgiving, since I have not been able to attend since 2019 and was looking forward to my grandson's first family holiday. However, I haven't been able to reschedule the procedure, yet, due to a few questions and concerns still not being answered. Hoping to get answers and move forward.No one can tell me what happens if I get this device implanted and then Medicaid goes away. I can't even afford to have it removed if they stop paying for the service. There's already so much I need that is not covered, I can't afford another thing.I also had questions about the materials used during the procedure due to my severe MCAS reactions to adhesives, solutions, plastics, meds, etc. That can probably be answered but hasn't been, yet. I just know the couple of months after my heart catheter last year were tough. Not sure which materials my body reacted to, but the rash alone was an ordeal. The meds and side effects and meds for meds were another round of agony. Waiting for answers on these questions while battling flares is the pits.
Today, the cardiologist recommended an implant that would send reports every six weeks over the next five years, especially since I having two TIAs (mini-strokes), Factor V Leiden (blood clotting disorder), Eagle's Syndrome (may need neck surgery), and family history of strokes and heart problems. AND especially after the August 3rd accident.
The device will monitor POTS/atrial tachycardia, which seems to be progressing to A-fib. A-fib also leads to stroke or heart attack.Every procedure has risks. After a heart catheter last summer, I had a "pseudo-aneurysm" scare AND a serious MCAS reaction to materials used during the procedure. Then came the rounds of antibiotics and more side effects and meds to deal with those.
Before getting an implant, I need to see an MCAS expert to minimize risks from procedures and meds. I can't even take Aspirin, because it aggravates MCAS. Arkansas does not have this kind of specialist, and even MAYO won't work with MCAS patients due to how tricky it is to treat. The right information is needed to make these decisions.
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Praying for your health and wellness
Tara King
I am so grateful to Help Hope Live for this campaign to benefit my dear friend, Denise Dobbs, who suffers from multiple, complex conditions requiring specialized care. Thank you, Help Hope Live! Please consider donating.
Joanna Beth Person-Michener
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Help Hope Live
Note in memo:
In honor of Denise Renae Dobbs
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Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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