From her small hometown of Manahawkin New Jersey, Hailey is a well-known member of the community. If you don’t already know Hailey and her story, she has been battling Systemic Lupus since 2015. She’s recently been additionally diagnosed with a rare disease called Kikuchi’s Disease. 

 
When she was 20 years old, she was diagnosed with Systemic Lupus, Fibromyalgia, Sjogren’s Syndrome, and Raynaud’s Phenomenon. This forced her to end her 17 year soccer career and she became fully dependent on her loved ones to take care of her. (Dressing, showering, eating, walking, etc.)

 
She was given numerous medications that never seemed to work and made her worse. Due to her health, she had to stop working her two jobs back in 2016, leaving her without an income for some time. She was denied for disability twice. She spent the last few years changing around her lifestyle and doing extensive research to try to reverse her medical conditions from a more holistic perspective. She was able to successfully gain her independence back in June of 2018.


She and her husband, Tyler, had started traveling around the country in May of 2018 for Tyler’s clinical work for his Occupational Therapy Program. They lived in Denver for three months, lived in California for a month and then in Phoenix for three months. After  their time in Phoenix, finances were tight, so since Hailey was feeling better, she attempted to return to work again and was hired as a hostess at a brewery at the end of September. On November 15th, the stress from working, had triggered another flare and she became very ill and had to quit. She spent her time taking care of herself for the rest of their time in Phoenix but things weren’t improving and she ended up in the ER a couple of times.


When Tyler graduated and became a licensed Occupational Therapist in December, they decided to move back to Denver and settle down there. Finances were still tight so she decided to attempt to work again and was hired at Mosaic as a Residential Program Manager for people with intellectual disabilities. This was the exact kind of job she had been hoping for since she graduated college in 2016. She was still not well and powered through the pain and discomfort, which eventually led to gastric issues.


She was advised to see a gastro doctor and had a routine double procedure on April 24th (upper endoscopy/colonoscopy) to just check if everything was okay. The results showed nothing more than some acid reflux and a hiatal hernia. The following day on April 25th she woke up with fevers ranging from 102-103, was constantly throwing up, and was overall not well. She contacted the gastro doctor and he said to come in for a follow up because those aren’t normal symptoms. She went in and all they did was checked her vitals and told her she was fine. The fevers never subsided since April 25th.


She contact her Rheumatologist in New York and he was concerned because these were not normal symptoms with her medical conditions. Her doctor advised her to go to the ER and try to get it figured out. At Rose Medical Center in Denver they told her she was fine and sent her home. A week later she ended up losing her eyesight, losing feeling in her body, and passed out while out in public. She returned the same ER and they did some test and said she was fine and sent her home.

 
When this was explained to her Rheumatologist in New York, he was extremely concerned. So he advised her to return to the ER and refuse to leave until she had answers. Again more testing and she was forced to go home. Her doctor was furious and said she should follow up with an infectious disease doctor. Because how serious the situation was, he made a few calls from across the country and found an opening at UC Health Medical Campus with an infectious disease doctor. During the appointment after questions and test, her fever spiked to 105 and she was immediately admitted that day on June 10th.


After meeting with multiple teams of doctors and department heads, they all did extensive testing to rule out as much as possible. During one of the biopsy procedures, her fever spike to 105.3 so they immediately shocked her body with 120mg of IV steroids for a few days until the fevers subsided. They slowly tapered her down and the fevers eventually disappeared.

 
They had requested all medical records form Rose Medical Center (the ER that kept turning her away) and found some frustrating news. The scans and test they did at Rose Medical center showed insane inflammation in all of her lymph nodes that had spread all throughout her body, including in her brain. Rose Medical Center never disclosed this information with her.
 

After more testing at UC Health Medical Campus, they were able to rule out Lymphoma, infectious diseases, and other cancers. It was now down to Rheumatological issues. After some testing they were able to figure out that she had bleeding in her lungs which was causing all of her symptoms. It turns out that the procedure back on April 24th had triggered a very rare response that only happens to 1-4% of people diagnosed with Systemic Lupus. It’s called Lupus Pneumonitis. Her lungs were being attacked and UC Health told her if she had waited any longer to receive treatment, she could have bled out through her lungs and died.


With a medication treatment plan, since she was doing a lot better, she was released from the hospital on June 18th . About two weeks went by and the fevers returned again on July 4th. Since all of the other medication options have not worked in the past her only option left was to agree to a new generation Chemotherapy called Rituximab, which is an IV chemotherapy treatment that sometimes works in people with Systemic Lupus. Although this goes against her holistic beliefs, her body is fighting so hard to stay alive that this is her only option now. Her first infusion is on July 22nd and the second part is on August 5th.

 
She is not able to return to work so she had to quit her job that she absolutely loved. It takes months for the infusion to kick in so the future is still unclear. She was told by UC Health that she has every right to sue Rose Medical Center for neglect and malpractice. Although after consulting with many lawyers, it would be in her best interest not to sue. Apparently the state of Colorado has a $300,000 cap on all medical malpractice cases. And by the time lawyer fees are added up on top of the reimbursement that her insurance would request, she would essentially not make any money from it.

After living in Colorado for two years, Hailey and Tyler made the decision to move to California in hopes of warmer weatherto benefit Hailey’s health. After almost two years of feeling healthy, Hailey unfortunately became sick again, with symptoms appearing worse than in 2019. Daily fevers, a cough, lack of appetite, weight loss, hair loss, and newly experiencing partial clonic seizures with reasons unknown are just some symptoms that she has been experiencing these last four months. She was diagnosed with Kikuchi’s disease, arare autoimmune disease, and other additional diagnoses are currently in question. Chemo treatments were initially tried again, as they seemed to work in 2019. However, Hailey’s body had a reaction to the treatment and she was unable to complete it. She was planning on trying a medication for Systemic Lupus that had the potential to decrease Heather’s severity of symptoms. However, with the new onset and unknown cause of symptoms, it’s put on hold.  Hailey has flown home for treatment and to have help from family and is currently admitted to NYU hospital. With symptoms from reasons unknown, the length of hospital stay for Hailey is variable, with hope that she’ll be released in better health. 

 
As her family, we are doing our best to be there for her through all of this since this is such a mentally, physically, and emotionally draining situation. We are attempting to raise as much money as possible to cover all the expenses for medical bills and her treatments. If you feel called, donations are greatly appreciated. Raising enough money to cover her medical bills while she remains unable to sustain an income for herself, will help take the stress and worry about paying her bills while she heals. If you aren’t in the position to donate, we ask that you please share this with as many people as possible.

 
We are praying every day that she will get back to being her funny, bubbly self that everyone knows her to be. she’s the strongest person and we know she can get through this. 

Thank you for taking the time to read her story.

 

With love,
The family and friends of Hailey Neluna