She’s Raising Two Sons with a Rare Condition—and Showing Others How They Thrive

Madison Sisson knew that both of her sons would have some differences, like herself, but when doctors told her to abort, she refused. The value of her boys' lives was no less than that of any other kid’s. Now, she’s showing the world how her boys are happy and thriving with LADD Syndrome.

A Mom and Two Sons All Diagnosed with LADD Syndrome

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Madison and her sons were born with Lacrimo-Auriculo-Dento-Digital syndrome (LADD syndrome). It’s a rare genetic disorder that can have a range of anomalies, like the inability to cry, kidney dysfunction, and physical abnormalities. Madison has only four fingers on one of her hands, but her symptoms are not very severe. Both of her sons, Ryker and Rhett, have extremely rare variants of the condition. They both have upper limb differences, hearing differences, and kidney differences.

Madison, 34, never lived like LADD lessened her quality of life. She knew her kids would have a 50% chance of getting the same disease, but her dream was to have a family. Hoping for the best, she became pregnant with Ryker at 21.

They Went Home and Cried After Their First Ultrasound

"I remember we went home and we cried," Madison said after her first ultrasound, which showed Ryker missing a left arm. "It was a terrifying pregnancy. I didn’t share it with anyone—not out of shame, but for my own emotional protection. I needed to hold on to some normalcy."

Some doctors mentioned termination, but Madison and her husband, Kane, wanted their baby.

Prenatal testing didn’t test positive for LADD. They found out after Ryker was born that he had the condition.

They Thought They Had Beaten the Odds

“It was really shocking to us,” Madison says. “We thought we had beaten the odds.”

In 2020, the couple prepared for IVF to reduce the risk of LADD in their next pregnancy. However, Madison became pregnant naturally, unexpectedly.

“Honestly, we were terrified,” she says. “After everything with Ryker, we didn’t know what to expect.”

Rhett was born with shortened upper limbs and complete hearing loss. Madison felt very overwhelmed two months after his birth.

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‘Just Keep Moving Forward’

“I called Kane, sobbing on the freeway,” she said. “And he said, ‘Whatever is meant to be has already been written. It is what it is. We just keep moving forward.’ ”

They maintained that mindset, and now they share the boys’ journey on social media, showing everyone how much they can accomplish. Ryker, now 11, loves showing everyone how he can eat and play video games with his feet.

“He’s really the one who started all this. Just this morning, as I dropped him off at school, he said, ‘Mom, maybe tonight we can take a video of me playing video games so I can show everyone how I do it,’” Madison said.

@madisonsisson22 Ryker wants to know what your favorite meal is to cook #boymom #limbdifference #limbdeficiency #fyp #sahm #hearingloss #bigbrother #littlebrother #cooking #unstoppable ♬ original sound - Madison Sisson

They Share the Adaptive Tools That Make Life Easier

Ryker’s video of himself, his mom, and Rhett making burgers has over 8.6 million views. Madison explained that many people think Ryker's feet are dirty. However, Ryker constantly washes his feet so that he can perform different tasks.

“Honestly, they’re probably cleaner than most people’s hands,” she said.

“So many of the comments we get are negative — people saying Ryker is going to struggle his whole life," she said. "But that’s exactly why we share the adaptive tools and show how he does things. We want to change the way people view disability. It’s not about living a horrible life or struggling forever."

Madison Encourages Her Sons

When Ryker was old enough, around age 8, he had a hard time accepting his differences. One night, he cried to his mom, “Why am I like this?”

"That was a really hard moment as a parent," Madison said. "I sat with him and told him, 'God makes everybody different — sometimes on the outside, sometimes on the inside. No two people are exactly the same. You can see your difference, like how you have one arm and Mommy has two, or how I have four fingers and Daddy has all of his. But everyone has something that makes them unique.’”

The Boys Can Accomplish Anything

Ryker is now happily independent, goes to public school, and is in general education classes. They’ve given him a lot of tools in their home that make activities, like taking a shower, easier and accessible for him.

“For the most part, he’s got it down,” Madison says. “He writes with his feet, so he has a special chair at his desk and another one at lunch for positioning. The only time he might ask for help is when his foot gets tired.”

Their Family is Amazing

“Right now, we’re not doing sleepovers or letting him go to friends’ houses unless we’re really close with the family,” Madison says. “He’s good about asking for help, but he’s at a vulnerable age. We want to protect his dignity and independence as much as we can.”

Rhett goes to therapy multiple times a week and attends a preschool for deaf children. Madison believes that having an older brother with similar differences will be very helpful to him.

“We’re really lucky,” she adds. “Our family is amazing — they love our boys like their own. They’ve been a huge part of our journey, and we feel incredibly fortunate to have that kind of support.”

Madison is proud of her family and of Ryker's handling of situations. If someone stares at him, he shrugs it off.

An Encouraging Following Helps Motivate Them

She is very encouraged by most of the comments she receives on their videos.

“My boys are super special and it’s just been really fun sharing them because we think they’re so special, but having you guys watch them and seeing what they do… People are like… ‘That’s amazing!’ and we’re like, yeah it is!” Madison told her TikTok viewers.

It’s wonderful that Madison’s boys are independent and confident. They have differences, but that doesn’t mean that they don’t have whole, joyful lives. They are happy and have great supportive parents, and will surely grow to do great things!

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“I can do all things through Christ which strengtheneth me.” Philippians 4:13

WATCH: She’s Raising Two Sons with a Rare Condition—and Showing Others How They Thrive

@madisonsisson22 Replying to @Lauren Sullivan —little story time on my boys’ syndrome! Also thank you all for being so sweet! #brothers #boymom #upperlimbdifference #limbdeficiancy #hearinglossawareness #fyp #geneticsyndrome ♬ original sound - Madison Sisson

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h/t: PEOPLE

Featured Image Credit: TikTok/madisonsisson22

Michaela Gordoni is an avid reader and part-time globe-trotter. With a bachelor's degree in International Relations and experience in the non-profit world, she has a passion for people and reporting. You can check out her portfolio here.