Han's Hope: URGENT Aid for Very Ill Mom & Toddler
Han's Story (longer version posted below for those interested in more details & feel free to follow her on FB at the link at the very end):
Hannah Rice & I met while studying philosophy at CU Boulder. Han was a top student & was teaching piano to put herself through college. My first impression of Han was that she was one of the sweetest people I'd ever met & a good listener. Now she is a disabled single mom in her 30s battling a set of complex & severe medical conditions, including Long Covid.
Some of you reading this will know Hannah & have your own fond memories of her. But what many people, even longtime friends, don't realize is that for the past few years, Hannah's health has been steadily deteriorating. She has gone from dealing with a chronic illness that still allowed her to work, to currently being mostly bedbound & dealing w/ severe chronic pain, brain injury, & loss of functionality. She urgently needs to focus on her healing & medical case to prevent further deterioration.
I'm starting this emergency fundraiser because Hannah is like a sister to me, but I can't help her alone. She is the sole parent of a sweet 2yo boy, Aren, who is her top priority & the light of her life, & she needs community to help save their housing & their future. Her landlord, who knows about her disabilities & Covid infections, has just given her a deadline of this weekend or Monday, 8/9 at the latest, to prove she has at least 9 months of rent to resign her lease for another year. Moving would be dangerous for her at this point, very possibly leading to irreversible decline. She has also incurred large out-of-pocket medical expenses. With even a small contribution, you could help change their lives.
Her illness began with a viral infection that wrecked her immune system & forced her to take a hiatus from school. After two years of inexplicable crushing loss of energy, swollen lymph nodes, cognitive decline, & flu-like symptoms, Hannah was diagnosed with ME/CFS, a complex neuroimmune disorder.
Han is from a cultic background & has been taking care of herself since she was a teenager. In order to make ends meet, Hannah continued to run her successful music teaching business & work side jobs, but working so hard with ME/CFS (a disease that punishes too much activity) took its toll. Hannah's condition worsened a few years ago & she was referred to neurologists & other specialists at University Hospital at Anschutz. She continued to run her business while going through the diagnostic process, while pregnant, & even when she was 90% bedbound postpartum for 6 months.
Last year Hannah was exposed to Covid-19 and fell extremely, frighteningly ill. Her autonomic nervous system was further seriously damaged & she developed new heart problems & had to wear a monitor. She was put on supplemental oxygen because she couldn’t breathe well for many months & she's still on it.
Her sister began helping Han & Aren with unpaid caregiving to get them through this time. Unfortunately, right as Hannah was about to dive back into seeing specialists so she could get answers & treatments, her housemate brought Covid home & they all became infected. Her body has been unable to handle the triple whammy of her diseases plus two rounds of Covid & she’s been in the hospital 6 or 7 times in the last couple months.
As of writing this, she is still suffering serious effects from Covid Round 2 on top of her underlying conditions. Among many other symptoms, her spine is pulling down on her brainstem because of her connective tissue disorder that has been worsened by Covid, which can degrade collagen. She wakes up daily with terrible migraines & nausea & has to take medication to be able to eat or drink. Her swallowing & vocal muscles aren’t working properly. She has severe inflammation pain, flu-like symptoms, & problems producing metabolic energy every day.
The “bad news” is that her health is too precarious for her to work, find another accessible place, or pack up & move right now. She needs time to recover & she has very specific needs for housing (including wheelchair accessibility) because of her diseases. The rental she’s in now took a long time to find & secure & will continue to be a safe home for her health if she can stay there. The number one thing people with both Long Covid & ME/CFS need is radical rest to give their bodies a chance to heal. When people with ME/CFS push past their limits, they can risk permanently declining to the severe form of the disease, which can mean being bedbound in a dark room for decades, & sometimes tubefed, in what has been called "a living death". This fundraising goal is equivalent to one year's expenses (rent & basic needs) plus her current out-of-pocket medical bills & essential repairs to her car to make it safe for her & Aren to travel to their many medical appointments. This will buy her time & a chance to spend the year urgently seeking medical relief, which will be an unpaid full-time job in & of itself.
The GOOD NEWS is that by contributing even a little, you have a special opportunity to directly help save Han & change the course of Baby Aren’s life too. She just needs a foothold to have a chance. Knowing her, I've no doubt there will be wonderful ripple effects if she gets it. Han is an incredibly determined person & knows how to navigate the medical system. She has referrals to multiple new specialists & a plan for steps to take. She is going to see a geneticist this fall because her doctors suspect a disorder called Ehlers-Danlos Syndrome. She will try to pursue physical therapy or other alternative treatments for her spine damage, brain injury, & joint pain once she rests & is strong enough to do so. She will proceed to neurosurgery only if necessary.
Because of the terrible timing of when she became ill, Han does not yet qualify for enough social security disability for her & Aren to be able to pay rent, much less to live on. She has entered all the Section 8 Housing lotteries, & hopes to win one day, but they are extremely competitive. She has exhausted all other resources for rental assistance, including EFAA. Unfortunately, there are cracks in the systems that are supposed to help people like Han & Aren.
Despite the obstacles, there is SO MUCH HOPE for her to greatly improve her condition. Han is an extremely devoted mom & Aren needs her. She is there for him now, even in her illness, but she desperately wants to be able to hike, camp, & dance with him. Han also dreams of getting back into advocacy work & starting a nonprofit for disabled single mothers one day. I know she so desires to be able to model to her son service & giving back to her community.
Please give what you can &/or share as widely as you’re able! If you know her, personalized messages when sharing would be so appreciated. She knows there is a lot of suffering in the world & a lot of worthy causes, & she will be so beyond thankful for any bit of help you can give to her family. She deeply hopes to pay it forward someday soon.
One of her providers found out I was organizing this fundraiser for her & wanted me to include this quote from him: "Hannah is one of the most tenacious, hardworking patients I have ever worked with. The amount she works with and has overcome inspires me, and as a patient she is tremendously consistent and dedicated to her recovery."
*Edit*: Some have expressed concerns that Han's landlord is discriminating against her on the basis of her disabilities. While both of the attorneys that have been consulted do think she might have a case, it would be difficult to prove, & Han is far too ill to deal with pursuing legal action right now, much less having to move as a consequence of pursuing legal action. All options have been examined & she needs to stay in her current rental.
*Edit 2*: Han is pretty savvy at navigating the systems at this point, & has thoroughly tapped &/or is utilizing all public & local non-profit assistance available for her situation. Unfortunately, there are big cracks in the systems, especially with such a serious & complex set of medical problems that began at such a young age. As mentioned, she's entered all the Section 8 lotteries & will continue to do so. The needs listed in this fundraiser have been carefully considered & include out-of-pocket medical bills.
*Edit 3*: Some have asked about state or federal Covid relief assistance for rent, as many think there are a lot of funds available out there. That money is mostly allotted for back pay to those who are behind on their rent. Unfortunately, despite Han's poverty & two Covid infections in the past 15 months, that does not apply to her as she was able to scrape together enough to keep her rent current between partial county rental assistance that is now expired & savings from her business from when she was able to work. She is applying for the 1-3 months current &/or future rental assistance that may be offered, but there are no guarantees for someone in her position who is not in arrears. As with so many public programs designed, in theory, for those in need, there are quite a few hoops to jump through. We've heard there are funds left sitting untouched as a result.
*Edit 4*: If you've found your way to us via the CBS 4 Denver story w/ Rick Sallinger, welcome! The story understated Han's medical condition & symptoms by quite a bit, as they had to compress it into such a short timeframe. We are so thankful for any support that comes through because on the day Han did the story she crashed hard just from the interview, but she had wanted to draw attention here as well as raise awareness of ME/CFS & Long Covid.
*Please note that all funds that are received will go directly from GoFundMe to Han's bank account*
Han's Longer Story (posted for those who are interested in details -- feel free to follow her on FB at the link):
In 2010 Han was finishing up putting herself through college as a driven student in the honors program at CU Boulder. She was studying philosophy & international affairs (including economics & Arabic), with a side of music & literature. She tutored & graded symbolic logic as a side job. She had won two merit scholarships which had enabled her to study abroad in the Middle East. She was applying for a Boren language fellowship. She'd been nominated by two professors for undergraduate of the year in the philosophy department. She had big plans for grad school & career & was so excited about her future. She loved dancing, camping, & hiking. SHE HAD EVERYTHING TO LIVE FOR.
She had dealt with a serious EBV/mono infection a few years earlier in her college career & had never returned to normal, seemingly unable to fight off other infections (strep, HN1N, etc). She took an antibiotic for a respiratory infection so she could be well enough to fly to Kuwait for her study abroad term. While there, she suddenly found herself unable to get out of bed in the mornings no matter how much she willed it & she had extremely swollen lymph nodes, chills, & profound fatigue. By the time she returned to the US to finish her senior year, she had extreme cognitive decline & had lost her ability to read almost overnight (this partially came back after several years). She had trouble with word recall & processing auditory information, among other cognitive tasks.
She thought it was just fatigue & stress from working while going to school & taking 7 classes without much rest, but she was never the same again. She had developed severe intolerances to many foods, chemicals, perfumes, & mold, as well as extreme sensory sensitivities (to sound, light, & even touch) also almost overnight. Anytime she tried to do activity she developed sore throats & flu-like aches & pains. Her lymph nodes were visibly swollen for more than two years straight & lymphoma was suggested as a possibility, but that didn't pan out. This was all really devastating for such an active & ambitious person.
At this time (pre-ACA), she had no health insurance as she'd had to leave school & was self-employed. She tried to work enough to save money to get healthcare but only made herself sicker & could never get ahead. She tried everything she could without financial resources to regain health. She rested, adopted a radical autoimmune protocol diet that entirely eliminated refined sugar & many other foods, & tried supplements & Chinese medicine/acupuncture. These steps helped her cope but she remained very ill. After two years, she was diagnosed with ME/CFS, a complex neuroimmune & metabolic energy disease.
When she found out she was expecting her first child in 2018, her doctors told her she had a chance of seeing her condition improve, because pregnancy can cause remission (sometimes even permanent) of autoimmune disorders, & ME/CFS & POTS have autoimmune or overactive immune system components. She had a close friend whose ME/CFS had gone into permanent remission after becoming pregnant. There were no guarantees, but she hoped for the best & did everything she could to prepare. In the 1st trimester she did notice her immune system symptoms were improved. She was full of excitement about the future & her baby on the way. She already knew he'd be her greatest treasure & she felt so thankful for the opportunity to be a mother.
Unfortunately, in her 3rd trimester, her neurological conditions, which had started in 2017, became scarily bad. The extra 45 lbs. of weight on her slim frame pulling down on her spine combined with pregnancy hormones that cause ligaments to relax had unmasked what is likely a genetic connective tissue disorder. She was unable to lift a mug, walk, or turn her neck without triggering dystonia or seizure symptoms. She was 90% bedbound (but still worked one day a week!) for the first 6 months of her son's life, but after the weight dropped & hormones shifted again, she was able to improve somewhat with the help of injections to her cervical spine.
Her headache & epilepsy neurologist, spinal neurosurgeon, & other doctors believe she has Ehlers-Danlos Syndrome, which causes her body to make faulty collagen. She is due to see the geneticist in the fall for an appointment she had to book more than two years out. As a baby, Hannah needed emergency colon surgery to save her life, along with an appendectomy. Following that surgery she had a seizure that caused her to stop breathing for a few minutes. Her doctors believe this & her lifelong scoliosis could be related to the genetic condition. Her headache & epilepsy neurologist thinks she likely has Tethered Cord Syndrome, which is where the bottom of her spine is inelastic, causing unnatural tension throughout her spine, oxidative stress, & contributing to instability between the top of her cervical spine & her head (a condition called Craniocervical Instability, or CCI). TCS can cause the brainstem to be pulled on unnaturally, which can act similarly to post-concussion syndrome or a TBI & massively affect the immune & nervous systems. Both TCS & CCI are fairly common in Ehlers-Danlos patients & Han will need to seek out qualified neurosurgeons & EDS experts who specialize in these conditions.
Hannah has lived with head pain varying from serious to intense 24/7/365 every waking hour since fall 2017. She is a tough cookie.
Fast forward to the Pandemic: Despite being mostly homebound & taking extreme precautions due to her immunocompromised status, Han contracted Covid-19 twice, the initial infection starting in March 2020 right before stay-at-home orders began & the second infection starting the very beginning of March 2021. Both rounds of Covid have set back her health in a cumulative way. She is now dealing w/ severe Long Covid on top of her already serious underlying conditions & is faced w/ losing her housing if she cannot raise enough money in the next few days (by August 1st) to prove to her landlord that she has her rent & basic bills covered for the coming year so that she can renew her lease.
Her conditions now include ME/CFS, POTS, concussion symptoms, other dysfunction of the autonomic nervous system, dystonia, multiple chemical sensitivities, nerve damage, vascular damage, daily migraines, & extreme spine & head pain, among others. It is hard to sum up what she is dealing with physically, because it is extensive & affecting multiple systems in her body, but a nutshell list of her symptoms & problems includes: spinal instability & tension pain all the way down her spine, extreme head pain where the lower part of her brain meets her cervical spine that is so bad she wakes up with daily intense migraines & nausea when she is able to sleep at all, trouble using her throat muscles to swallow or speak (although she can still do both in moderation, thankfully), trouble chewing & even swallowing water without pressure & pain in her head, loss of proper blood flow to her head when she sits up for too long (which can cause fainting &/or seizures), sublexing joints & pain in multiple joints that adds to her difficulties sleeping without waking up every hour, dropping oxygen SATs when she tries to walk too much, heart problems including new arrhythmias & extremely high heart rates when she does activity which makes basic activities like walking across a house as exhausting as running a marathon, chest pain, neurological damage in her legs which can make it difficult to walk steadily, extreme & crushing fatigue & loss of energy, feeling every single day like she has the flu w/ fevers or chills, sore throats, inflammation pain, & rashes. This is not a full list, but things have gotten very serious, and she needs to get help from specialists as soon as possible.
Covid can contribute to collagen breakdown, & that could partially explain why it has worsened her spinal instability & brain symptoms. It's also known to affect the brain & cause neuroinflammation.
She is seriously ill & urgently needs to find "spare" energy to put into trying to find answers & treatments to improve her health, as well as needs to radically rest in order to give her body a fighting chance to even begin to heal (on top of being a devoted mom to an active & teething toddler). She has pushed through serious chronic pain & energy deprivation to do many things, so when I say she is now very debilitated, I don't say it lightly.
She will need to have enough functionality to pick up where she left off on a long journey to see specialists (she has at least 15 specialists to see this summer & fall alone) & get help to save her life & future with her baby. With her ME/CFS she already deals with PEM (post-exertional malaise), which means her symptoms become worse after any form of physical, mental, or extreme emotional exertion. Many Long Covid patients are also dealing with PEM, so she's now dealing with a triple whammy as far as PEM goes. The advice for Long Covid patients who are dealing with this is to pace & do radical rest so that the body has a chance to heal. This is the same advice given by ME/CFS experts.
Dr. Nancy Klimas, an ME researcher & clinician at University of Miami, says, "They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS & patients undergoing chemotherapy."
Han is too ill to physically handle finding a new place & most rentals are not compatible with the needs of her extremely complex & severe medical conditions, which include chemical & mold allergies, sensory sensitivities, & need for both wheelchair & parking accessibility. Most importantly, moving would literally be dangerous for her physical health at this stage, very possibly causing her permanent decline -- a fate she wants to do everything in her power to avoid for her precious son's sake. She's been in the hospital 6 or 7 times in the last few months alone. Han needs our help covering basic physical needs & bills, as well as significant out-of-pocket medical expenses she's incurred & will incur this year.
For those who are curious, her landlord knows about her disabilities & Covid infections. Hannah had unexpectedly received a non-renewal notice while in the hospital, despite having been a model tenant & always paying rent on time. She has consulted with pro bono attorneys & it appears that the non-renewal notice may partially have been a form of retaliation against her because of her need for a disability accommodation. When the weather got hot, Han & her sister realized the cooling system wasn't working. The rental had been listed as having Central A/C & the landlord had also verbally promised that it did. Unfortunately, that turned out not to be true. Hannah's sister told the maintenance guy that it was a serious need for Hannah due to her disabilities (because of her brain injury & autonomic nervous system damage she is unable to regulate her body temperature normally). Shortly thereafter she was told she wouldn't be able to renew. Her attorneys think she may have something of a case, but it would be very difficult to prove discrimination. Regardless, Hannah is too sick to pursue legal action, especially since it could result in her having to move.
The good news is that the rental has an alternative cooling system that needed to be repaired, & after consulting with the attorneys, Han took the peaceful approach & told the landlord she is too sick to move. The landlord agreed to renew her lease for another term, contingent on Hannah proving at least 9 months of rent money in the bank, since she knows about Hannah's conditions. Even with Covid, Hannah's only option at this point to avoid losing their crucial housing is to raise the money.
Previously, Han was self-employed & had a successful music teaching business for many years, keeping up with it even while chronically ill. She now has unpaid caregiving help from her sister & is too sick to work. Han & her family are falling through the cracks in the systems that are supposed to support disabled people. Please help Han save her housing & give her & Baby Aren a chance to build up this year to a brighter & healthier future. She believes there are answers to her medical case & she won't stop until she finds them.
Her 2yo son, Aren, is the light of her life, the biggest joy, & her greatest adventure, & she is so beyond THANKFUL for him. She wants to give him a great life, as all children deserve. He loves to dance, has a great sense of rhythm, delights in books & jokes, & already wants to listen to chapter books & Calvin & Hobbes for storytime. He is such a good little helper & likes to sweep the floor & help w/ laundry & cooking. It must be hard for him to see his mama in pain, but he already gives her hugs & shows lots of empathy. They are extremely close, & Hannah pushes through her conditions in order to always show him he is her top priority, but she dreams of being able to do more activities with him again in this crucial stage of his life.
She's so thankful for the support from friends & community she's already received. It has enabled her little family to get this far. She couldn't have done it alone. But she's never been at this scary of a stage before. She's a pretty private person, so it was a little difficult for her to grant permission to share her story in this way, but is in such need & will be so very grateful for help on her journey. She's also interested in raising awareness about her conditions so some vulnerability is worth highlighting these conditions that cause so many to suffer invisibly.
Her known expenses for the year until September 2022 have been carefully calculated, & the amount we are needing to urgently raise for her includes her new rental deposit, rent for the coming year, other basic bills, supplements, & out-of-pocket medical expenses both incurred & expected this coming year. It also includes essential car repair that is needed so she has an accessible vehicle that is safe for her & Aren to take to their many medical appointments, as she is too ill for other forms of transportation right now. Han is a Boulder native & has spent most of her life in the area. Cost of living where she lives is very high, but this is where her PCP, specialists, caregiver, & most of any other support she has are located, so the fundraising amount reflects both this and her costly out-of-pocket medical expenses.
This is a tremendous opportunity to help a vulnerable family & make an immediate & huge difference in the lives of at least two people. She needs a community of people to come alongside her & give her & her baby a chance at a better life by giving her a foothold to pursue healing instead of fighting to meet basic survival needs this year. Her PCP, who has managed her complex case for years, teared up one day & said Hannah has handled this better than she would have herself & has shown an amazing drive to fight for her life. She is a fighter, & she's been fighting the last several years without a break or vacation. Now after two rounds of Covid she desperately needs to rest to have a shot at rebuilding.
Although she does not have many physical resources for extra communication right now, I know she would like very much to make even more extensive connections with people in the community long-term. Sweet friends have reminded her it takes a village and she is so grateful. She is also thankful for both science (& medical research) & prayers.
*Please note that all funds that are received will go directly from GoFundMe to Han's bank account*
We'd love to have you follow developments on her journey by FB friending her at: https://www.facebook.com/profile.php?id=100071002879687
Or follow her journey on Twitter at: @HopeForHan
You can also donate directly to her Venmo if preferred: @HannahAsPhoenix
About ME/CFS: https://www.cdc.gov/me-cfs/about/index.html
