Community Rallies For Smithtown Mom Who Faced Health Scare

This summer has featured a lot of ups and downs for Smithtown resident Jennifer Muilenburg, but luckily the local community has come together to help her out.

Muilenburg, 38, knew something was wrong when she felt short of breath for a couple of weeks, but didn't think anything of it. She made an appointment with her doctor who at first thought she might have a blood clot in her lungs.

She was then sent to have a CT scan which did not show a blood clot but did show diffuse disease in both of her lungs so Muilenburg was sent to directly to the emergency room.

"In [the doctor's] words, 'these are not lungs that are seen in people walking around,' usually they are hospitalized and very sick and even possibly on a ventilator," she said.

She was admitted to the hospital on July 3 and underwent several lab tests for pretty much everything from pneumonia to auto immune diseases.

After all was said and done, everything in her lab work came back normal so the doctors then did a bronchoscopy, washed out her lungs, and took a biopsy.

Afterwards, she was sent home on oxygen for 5 to 7 days to wait for the results of the biopsy.

The tests showed that she was believed to have hypersensitivity pneumonitis, a severe allergy that effects the lungs which is usually treatable with steroids and removal of the effecting agent.

The biopsy result then came back inconclusive and she was sent to the Mayo Clinic in Minnesota for further evaluation. She got another chest X-ray which showed that she was getting better not worse.

"The concern was that there is something in my home that I was allergic to and the doctor suggested I either go on vacation or be readmitted to remove myself from the environment to see if I improve at all," Muilenburg said.

New York Presbyterian then called her and decided that it was not safe for her to be home and requested that she come back to be admitted.

On July 19, she went for a surgical lung biopsy where they went in and removed a piece of her lung to get a bigger sample to evaluate.

The pulmonologist came back with some preliminary information and confirmed that she did not have cancer, and did not have hypersensitivity pneumonitis but could possibly have a disease called Lymphangioleiomyomatosis (LAM).

Muilenburg was then told that she would either need a lung transplant or she could possibly be facing a terminal illness and was even advised to contact a chaplin.

"This is not a simple case," she said. "I literally have the best doctors in the world trying very diligently to figure out what is wrong with me."

Going through the process of being told she was might die was the most challenging part for Muilenburg.

"The most difficult thing was being told that I was terminal and realizing that my kids will most likely not remember me," she said. "I began preparing for my own death and ways that they could remember me, like recordable books, letters, videos."

However a few weeks later she finally got a diagnosis - STUMP- stromal muscle tumor of unknown pathology in her lungs, a rare condition which has very limited literature and data on treatment, but not terminal.

She was started a theoretical treatment and in the meantime, continued to be at home dependent on oxygen with limited physical mobility due to her shortness of breath and decreased oxygenation.

Now that Muilenburg finally found out she is not terminal, she was able to return home last month to continue treatment for the disease at home. But before she knew her diagnosis, she became concerned for her family and their financial future resulting in her starting a fundraising page on GoFundMe.

"I started the GoFundMe page before I had a diagnosis, and I believed that I may be terminal," she said. "I still remained hopeful but realized that this was a very real possibility. I have 3 young children and a husband that still need to be provided for. If I were to survive, I would not be returning to work for some time, and still have bills to be paid that one salary won't cover."

The page, which had a goal of $15,000, has raised a total of $17,865 in less than a month.

"It really was humbling and overwhelming [to exceed the goal]," Muilenburg said. "Friends from all throughout my life, past coworkers, former teachers, family friends, and perfect strangers all really pooled together and amazed me more than I could've ever imagined."

In addition, friends from high school reached out to me and asked to set up some other fundraisers.

Two friends who worked as LuLu Roe consultants held a successful online sale with proceeds donated to Muilenburg and her family. Another high school friend, and restaurant owner, is hosting a fundraiser event on Sept 14 at Senix Creek Inn in Moriches.

"When I was given my diagnosis, I cried. It meant that I had a chance. That I might just survive this whole thing," she said. "On the day I came home there were so many mixed emotions. Of course I was excited to be with my family, but I was a little nervous because I know my physical limitations and know how demanding caring for 3 young kids can be."

But Muilenburg is definitely not alone. Initially, she posted on a Smithtown moms and friends Facebook group page for help with getting meals while she was undergoing testing, and the local residents all "jumped all over it" and in about an hour, Muilenburg had enough food for a month.

"I couldn't have imagined ever getting as much help and support as we received," she said.

It wasn't just the local moms who helped out. Several people donated or contributed to buy school items for her children.

She also credits several other people for helping her including the Commack Fire Department and KRC Home improvements who helped to fix her home to remove any potential allergens, the FDNY for providing transportation to and from NYC, friends who have babysat, grocery shopped, cleaned her home, and just helped to keep her life going and many more.

"It really takes a village and I am grateful for my village," she said.

When asked what advice she would give to anyone going through something similar, Muilenburg replied: "Don't give up. Keep your faith, and just keep going."

During this process she learned to never give up.

"I have learned that even though they may have told me I wasn't going to survive, that wasn't an option, to just keep going," she said. "And of course, I have learned how much everyone can come together and that there really are good people in this world."

Photos courtesy of Jennifer Muilenburg