Story of NF: Markus S.

As shared by his mom Natalie. Natalie's cousins are Kristen Anderson-Lopez and Robert Lopez, awarding-winning songwriters, best known for writing Frozen and Coco, and they will be performing at the 2024 National Gala.

When Markus was 3 months old, doctors noticed a spot in Markus's right eye. At first, he was misdiagnosed with the wrong disease, and given inappropriate tests. Then, we found the right care and were told he had a very rare non-malignant eye tumor. We were still told not to worry, since these types of tumors never change. He also had what looked like a seizure as a newborn, and still, doctors felt that it was nothing to be concerned with.

Then at 6 years old, he was diagnosed with NF2-related schwannomatosis when a second rare tumor was found in his other eye. I pushed for more tests when he still didn't see very well. At the same time his grandmother ended up in the hospital in a coma and battling leukemia. It was a very bad spring, summer and fall. His grandmother survived. And we began our NF2-SWN journey traveling to three states to see new specialists and find out the treatment options. We tried to learn all we could by attending and listening to conferences about the disorder from the Children's Tumor Foundation and later NF2 BioSolutions. We have also gotten involved in NF Midwest. I'm also part of REiNS.

Markus has tumors in his brain, ears, eyes, and spine. He also has a rare brain anomaly from NF2-SWN. There have been so many ups and downs on medication this past year, these were resulting in multiple medication changes and personality changes and major weight loss. Not long ago, Markus had a scare and lost more than two-third of his hearing overnight. Luckily, we were able to recover most of his hearing with some medication that brought down the inflammation. He is doing very well now on a targeted gene therapy treatment that appears to be stabilizing many tumors. These treatments are made possible through events like Cupid's Undie Run that we have participated in every year since 2015, to raise money for the Children's Tumor Foundation.

Markus' tumors have created many hurdles for him to overcome. He had major spinal surgery across the country to remove two tumors the size of oranges, both from inside his spine. Markus was a long-distance runner and is still working hard to overcome his drop foot. He had been in major recovery for more than one year post operation.

Now Markus enjoys hanging out with friends. He has done work on rebuilding old computers and fixed his car on a number of occasions. He loves working on his car, and he enjoys going out in nature on 4-wheeler rides. He is a talented artist. As a sophomore, Markus won 1st prize at his school's art fair. His teacher said he rarely gives out A+'s, but could see Markus's incredible attention to detail. He made a stamp to print the picture he designed of a bearded dragon. His favorite animal is our pet bearded dragon.

Markusis on his way to earning his Eagle Scout rank through Boy Scouts. He is currently a Life Scout. He is taking both advanced Math and Science courses. He has earned mostly A's and B's most of his school career, even though he has a few learning disabilities that affect how he sees and mostly now how he hears.

Markus has overcome many things doctors were unsure he would be able to do: he perplexed many of his specialists with his ability to walk, hear, and see in 2019. He is truly a walking miracle.

[My cousins, songwriters] Bobby and Kristen are so amazingly talented. And we are so grateful we have them in our lives. I remembered when Bobby was about 10 years old and he showed me a song he was writing in his room. I heard him perform it on his Casio keyboard, and then I needed him to explain that he wrote the song and he wasn't just playing someone else's music he liked listening too.

We are excited to finally get to see them again, as a family. And we cannot wait to hear them perform at the Gala in NYC. Frozen on Broadway was the first Broadway show that Markusand his sister have ever seen. It was a spectacular family experience .

Markusloved their version of Winnie the Pooh, it was his absolute favorite when he was about a toddler. He then needed to dress up as the Backson for Halloween. So we all went as characters from Winnie the Pooh that year. Markuswas the Backson, we had Winnie the Pooh, Rabbit, and Eyeore. We have also watched and listened to the soundtracks for the Frozen movies and Coco many many times in our household.

Click here to read more about read more about the 2024 National Gala.

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