Mom Was Diagnosed with Incurable, Rare Tumor Disease — and Then Her 14-Month-Old Got It Too (Exclusive)

Lindsey Marson was diagnosed with neurofibromatosis (NF) at 2 year old while her son Bryson was diagnosed at only 4 weeks old

Lindsey Marson has spent most of her life with neurofibromatosis (NF) — but she didn't think she'd have to watch her child grow up with it, too.

At 2 years old, Marson, 28, was diagnosed with NF, a rare genetic disorder characterized by benign tumors that form in the brain, spinal cord and nerves. Thinking that she just had a bad strain of the common cold, Marson's parents took her to the doctor where they pointed out that she had several café au lait spots — birthmarks that tend to point to a diagnosis of NF.

Additionally, Marson's right leg was shaped like an "S," another sign of the disorder. "They checked me out and I was diagnosed then," Marson tells PEOPLE.

After she gave birth to her now 14-month-old son Bryson, Marson and her husband discovered that her genetic condition had been passed down to her son.

"Devastating is the perfect word for it," Marson says when asked how she felt about Bryson's diagnosis. "And guilty, I felt very, very guilty."

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"There's a 50 percent chance of passing along NF and I have had people say to my face and online that I'm a terrible person, 'Why would you ever risk it?' And somebody said to me, [something that] really stuck with me is that you are never promised a healthy baby. Regardless of genetics, you are never promised a healthy baby."

Marson opted not to do any genetic testing before welcoming her son. "One, I was a first-time mom, I really had no idea what I was doing. I was just excited to be having a baby. And two, if I had found out Bryson had NF while I was pregnant with him, the only thing it would've done was prepare me a little bit more."

Bryson was clinically diagnosed with NF at 4 weeks old. Since then, he has had over 80 hospital appointments and has been in and of doctors' offices his whole life. He has a tumor behind his eye, brain and part of his face.

"His NF is noticeable," Marson explains to PEOPLE. "When he was born, we could tell that his eye was swollen and something wasn't quite right."

Although his NF is more visible than hers, Marson isn't quite sure if Bryson is in pain. "Because he can't talk to me, he can't tell me. But I think he might be in a little bit of pain because I can tell if he does rub his eye the wrong way where the tumor is, he will get really fussy."

Though she grew up with the disease herself and knew she could pass NF on genetically, Marson wasn't fully aware of how severe the disease could get. "When I was pregnant with Bryson, I did not know NF could be that severe. I knew that there were more severe cases, but I figured that I have it relatively mild."

Marson explains that there is a spectrum of how NF displays itself in different people. "NF varies so wildly among every individual. I'm pretty lucky I have it, I would say, more moderate."

Now that she's older, Marson's had around 20 surgeries to help straighten and lengthen her right leg. In her day-to-day life, she wears a KAFO brace that she can't take off unless she's sleeping.

"He's just living a different life," Marson says of son Bryson. "I have to remind myself that, you know, maybe the reason he's not eating is because this is happening or that's happening [with his condition]. The biggest thing with raising a child and not getting to experience the normal...[is] trying not to compare."

She admits that when she sees "another baby born and they're perfectly healthy. I just want to tell that person, 'You are so lucky.'"

Although Marson describes Bryson's diagnosis as "devastating," she says that their shared experience has created a stronger bond between the mother-son pair.

"I don't know what it would be like if he didn't have [NF], but I truly do think that there is definitely a stronger bond. And as he grows up, I want to make sure that he knows to remain positive and that I will teach him how to do that and how to overcome certain things."

As her son gets older, Marson reveals that she's most excited for Bryson to play baseball and get acclimated with his peers. "I'm excited to see how he interacts with other kids and all the friends that he makes."

"And hopefully he'll have a good, positive attitude," she adds.

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