Help Put Noelle Back Together Again

My friend Noelle is a fantastic human being -- a warm, vibrant woman who's spent much of her life quietly helping others: counseling teenagers, working in food banks to provide food for the needy, or keeping company with non-verbal seniors, holding hands until they smile. Other times, she's been a public, online resource for people with chronic illnesses; and a researcher, writer, and educator for others dealing with similar illnesses.

With skill and kindness, Noelle has always made a difference for people who need help. But now, Noelle is in terrible health and she's the one who needs help, urgently.

Bed Bound with Constant, Severe Pain

Due to a complicated onset of illnesses and injuries, Noelle is now disabled and confined to bed more than 20 hours a day. To make things even worse, she suffers from severe pain 24 hours a day.

The list of Noelle's conditions is long: it begins with a genetic condition called Ehlers Danlos Syndrome (a connective tissue disorder that affects the whole body) and Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome). In updates, we’ll share more about what these illnesses are and how they happened.

For now, we can explain that these syndromes have led to further complications including: Tethered Cord Syndrome, Craniocervical and Atlantoaxial Instability, Temporomandibular Joint Dysfunction (TMJ) and Jaw Instability that’s causing daily migraines, and probable Thoracic Outlet Syndrome. Noelle has fought her hardest to manage these conditions on her own, for more than a decade. For most of that time, her heroic efforts kept her upright -- but over the last two years, the illnesses and injuries finally knocked her down.

Without exaggeration, I can tell you that Noelle is the strongest person I know. But the pain she bears every day is more than anyone could possibly take. On the clinical pain scale shown here, Noelle is usually at 6 or 7. And for part of almost every day, her pain is an 8 or 9.



The pain keeps Noelle in bed except for a few basic things -- toileting, bathing, eating, a few minutes at the computer, and trips to the doctor. On very rare days, Noelle gets an hour or two in the 4 and 5 range, to enjoy a phone call with a friend, or even take a “trip” outside to sit in the sun. But those days are rare. Her regular days are horrible and no way anyone should have to live.

The Good News Is That Things Can Get Better

The good news is there are known surgeries and interventions that can help. If Noelle can access treatment, she could live a more full, pain-free life. The bad news is that insurance doesn’t cover all of these treatments in full. But more good news: If she can access needed care, there's a good chance she can regain some functionality and reduce much of her pain. We believe that with this proper care, Noelle can get back on her feet and return to a life of joy -- a blessing for herself and a blessing to all she will return to helping.

We hope to raise $50,000 to pay for her needed medical care: surgery, medical equipment & care, transportation & travel expenses, and nursing care that she needs to get back on her feet.

Noelle’s medical issues are complex and interconnected, so a multi-pronged treatment approach is needed.

In a first success, Noelle has obtained a dental splint to help manage daily migraines from TMJ and upper cervical instability. A splint is a support that can help stabilize these wobbly joints, and it has somewhat reduced pain from migraines. But great as this splint is, it's only one of the many treatments she needs.

Above: Noelle with her dental team.

Spinal Cord Surgery -- an Urgent Operation

Next, Noelle urgently needs surgery for Tethered Cord Syndrome, a condition in which the spinal cord is abnormally attached or taut in the spinal canal, causing great stress to the brain and spine. Tethered Cord Syndrome causes a host of problems, including severe back and leg pain; numbness and weakness; bladder and bowel dysfunction; decreased motor function; and headaches.

Noelle has done everything she can to treat this condition without surgery, but without success. Her surgeon is one of the only doctors in the United States who is an expert in tethered cord surgery for patients like Noelle who have Ehlers Danlos Syndrome, a connective tissue disorder, which greatly complicates the surgery. Because of Ehlers Danlos, only two or three experts in all of the US can treat her correctly and safely!

With luck, this surgery will be sufficient to address the tethered spinal cord syndrome, and we hope that her recovery from surgery will be relatively straightforward (though it may require many weeks of home health support). Based on her response to the tethered cord surgery, Noelle and her medical team will re-assess her overall health to see which condition to work on next.

The next treatment might be more jaw and neck work, or surgery for cervical instability or Thoracic Outlet Syndrome. We won't be surprised if treatments go through all of 2021 and into 2022 because of the need for recovery time and evaluation. But with each treatment, we hope Noelle will gain a meaningful amount of function, and lose a meaningful amount of pain.

Can you make a gift today? Your help will make a world of difference.

Your gift will not only help support Noelle's health, but also help the lives of the other chronically ill people Noelle pulls up from the holes in our medical system as she fights her own battle.

I'd be so grateful if you made a gift today, and if you'd share this GoFundMe page with your friends and family today to support my friend Noelle, who is so special to me and many others. Although - or rather, because Noelle has struggled for a long time to find appropriate healthcare for her rare diagnoses - she’s passionate about using her precious time & energy to gather & share information for others with similar chronic illnesses. She’s determined that the hard-earned knowledge won from walking this path might mean someone else won’t have to go through this alone.

The need is urgent. We've learned that if Noelle doesn't have her spinal surgery soon, she is at real risk of permanent damage to her spinal cord. That's a risk we can prevent, with your contributions.

We promise you our thanks and all the updates you could ever ask for -- about her surgeries and treatments, her recovery, and her life thereafter.

Sincerely,

Phil Marsosudiro

P.S. I'll be posting updates to include more detailed information about some of Noelle's conditions. I'll also be posting longer stories about her path -- useful for understanding her story and also useful for understanding more about chronic and invisible illnesses. So many people with chronic illnesses need our understanding and support. Meanwhile, please contact me through GoFundMe with any questions -- thank you!

Above: Noelle with one of her favorite seniors

Note to donors: All of your gifts will go to  the Heidi Noelle Hartbarger Special Needs Trust, for which Phil Marsosudiro serves as trustee.  A "special needs trust" is a legal vehicle that allows funders to provide "supplemental and extra care" to the beneficiary (beyond what is provided by the government ) without endangering the beneficiary's government benefits such as SSI or Medicaid.  Special needs trusts are commonly used to help people with physical and mental disabilities for whom government programs provide essential but insufficient care. All funds received by the Heidi Noelle Hartbarger Special Needs Trust will be used to pay for Noelle's medical and healthcare costs described in (or directly related to) the narrative above.  Please feel free to contact Phil through GoFundMe with any questions -- thank you!