Honoring the life of Noah Rooney

Updated - July 13, 2023

​​Hello, Everyone. I am reaching out with a heavy heart in regard to helping support a family who has tragically lost a son, brother, uncle, nephew, cousin, and friend. Not only are Noah’s parents struggling with the unbearable pain of losing their son, they have accrued extreme financial hardships from the funeral expenses and the significant medical costs for his treatment.

I was so blessed to have spent nearly 6 years with Noah by my side and the last 14 days at Mayo Clinic in Rochester before he passed away. Many of the people who knew Noah would agree that he always managed to find the positive in any difficult situation. While in the hospital, Noah appeared to be very healthy and was rarely on any pain medications, except his regular medication to treat his illness. Thankfully, he was never in any pain. Many of his doctors said, “Noah looks a lot worse on paper.” He was looking very healthy in the hospital up until his last few hours. Each day we would eat outside in the courtyard, wander through the gift shop multiple times a day (even though it never changed), and walk aimlessly around the hospital, just to occupy our time. Luckily for Noah, there was a Starbucks where he could get his regular Caramel Ribbon Crunch Frappuccino, something he would get at least once a week prior to being in the hospital.

As Mayo Clinic is a teaching hospital, Noah had many doctors that had heard about his rare case and would bring their students to Noah’s room to talk about his medical procedures, his symptoms, treatment, potential causes, and current vitals. Noah absolutely loved talking to the doctors and students about his experience and condition. However, on May 11th, Noah started to feel significantly worse and his vitals became concerning to the nurses. To err on the side of caution, the team of doctors decided to bring him to the ICU before things could regress anymore. Within 20 minutes of being in the ICU, Noah was placed in a medically induced coma to slow his system down and to make him more comfortable while they tried to regulate his symptoms and find some answers. Thankfully, they did find some answers. He had developed Systemic Capillary Leak Syndrome on top of the Macrophage Activation Syndrome (MAS) or HLH, along with his Adult-Onset Still's Disease. Thankfully, this all occurred after he was placed into a coma before things had rapidly declined. Unfortunately, Noah was unable to overcome these diagnoses and passed away peacefully at 12:57 AM on May 12, 2023.

The fabulous medical care and treatment Noah received at Mayo Clinic and in Fargo came with a significant price tag. Noah’s family is paying off these debts and would greatly appreciate any donations that you could make to help them with his medical and funeral expenses.

Thank you for your continued support. It means a lot!

My Venmo is listed below for donations, which will be given to Noah’s family for their expenses!

Grace-Hoffmann-3

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Posted April 30, 2023

Hey Everyone! I am Grace Hoffmann, Noah Rooney’s girlfriend. I am making this GoFundMe in hopes of helping Noah pay off the many medical bills he has and the ones he will continue to have over the next few years during his journey to recovery. The donations will help ensure Noah gets the best care and will help relieve the stress from being out of work for long periods of time.

As some of you may or may not know, my boyfriend, Noah, was recently hospitalized for severe body aches and pains, swollen muscles, and high-grade fever. After well over 100+ tests and scans, he was finally diagnosed with a very, very rare autoimmune disease called Adult-Onset Still's Disease or AOSD. Stills is very difficult to diagnose because, unlike many other illnesses, there is no specific test to use to tell whether it’s positive or negative. The symptoms of Stills mimic thousands of other illnesses, and it can take months to diagnose. Noah had to meet with numerous doctors to rule out cancer, infectious diseases, and other autoimmune diseases. Fortunately, Noah had all the symptoms at the same time, and an amazing team of doctors in Fargo that helped diagnose him quite quickly compared to other cases.

Noah was discharged after 5 days in the hospital and was given many medications including a daily injection to try and prevent the Stills from having another episode. All was going well for a couple of weeks until one night he had a flare-up and decided to go to the ER as a precaution. After a couple of nights in the hospital where doctors tried to figure out what was happening and why, they found that Stills was starting to affect his organs. The hospital completed a bone marrow and a liver biopsy on Noah and found that his liver enzymes were very high, along with the iron in his blood. His team of doctors decided it was best to have him transferred to another hospital with doctors who specialize in this disease and can respond quickly if his liver fails. That night, he was flown by airplane to the Mayo Clinic in Rochester.

At Mayo, Noah was diagnosed with a rare syndrome called Macrophage Activation Syndrome or MAS, which was a result of Stills, which for most can be fatal, but in Noah’s case, we are hoping it was found early enough! Typically the body uses the macrophage cells to attack bad cells when you get an infection, but in Noah’s case, the macrophage cells are attacking his healthy cells and are causing his liver not to work properly. After talking with his doctors and if all goes according to plan, Noah will be prescribed an intense regimen of medication in an attempt to send the MAS into remission. He will have to be on high doses of steroids for a year to a year and a half, with the hopes of slowly weaning him off of them.

We are so grateful for all the amazing doctors, nurses, and everyone else that has helped Noah along the way so far! He still has a very long journey ahead of him and anything would be greatly appreciated. Thank you to everyone who has reached out and helped through this tough and unknown time! If anyone has any questions please feel free to reach out, and please help share Noah’s story!

If anyone would like to donate through venmo you can share to either myself or Noah

Grace’s Venmo: Grace-Hoffmann-3