SerpApi.Org
Emily Wallace’s “mom intuition” led to her son’s Angelman syndrome diagnosis at just 18 months
NEED TO KNOW
- Emily Wallace trusted her intuition to push for answers, leading to her son Griffin’s Angelman syndrome diagnosis
- The mom of six shares her family’s journey with multiple disabilities, including autism, dyslexia and a rare bone disease
- Emily uses social media to highlight her family’s challenges and joys, advocating for inclusion and quality of life
For one woman, trusting her “mom intuition” led to a life-changing diagnosis.
Emily Wallace is a full-time caretaker for her six children: Harrison, 12, Wyn, 11, twins Griffin and Sawyer, 9, Posey, 8, and Lindy, 7, alongside her husband, William, 40.
“We wanted a big family. It was all intentional. This was planned,” Emily, 37, tells PEOPLE.
What she wasn’t expecting, however, was Griffin’s Angelman syndrome diagnosis at just 18 months old — when she was 20 weeks pregnant with Lindy.
“When they told us the diagnosis of Griffin, we knew our family was done,” she says. “We were done because our life was forever changed.”
According to Mayo Clinic, Angelman syndrome is a rare genetic change that causes delayed development, problems with speech and balance, and intellectual disability, impacting nearly 500,000 people worldwide, including Colin Farrell’s oldest, James, inspiring the movie star to start a foundation to support families who have children with intellectual disabilities.
Before Emily received Griffin’s diagnosis, she had a feeling something was “wrong,” noting that he struggled with nursing and taking a bottle.
“When the twins were born, I had a gut instinct that something was wrong, and I don’t have any other feelings other than a mom intuition,” she explains. “[He’s at] pediatricians and emergency rooms trying everything and no one really could figure out what was going on because he was still growing and he was still kind of eating.”
She says “no one was worried” about her son’s delays at first, with some insisting he was “just behind.” But Emily persisted, and eventually changed pediatricians for Griffin, ordering genetic testing and early intervention, feeling like “some things are just not adding up.”
Never miss a story — sign up for PEOPLE’s free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories.
After the testing and speaking with a genetic counselor, Emily was informed that Griffin had Angelman syndrome — a diagnosis she says “rocked our world.” The genetic counselor explained that Griffin had the Uniparental disomy (UPD) genotype, in which both copies of a chromosome pair come from one parent.
“He needs lifetime care. He’s never gonna go to college. He’s never gonna drive a car. We are his forever caregivers,” Emily says. “That’s kinda why we stopped having children. If I would’ve known he had Angelman syndrome when he was born, I probably wouldn’t have had my other two children, because it’s a devastating diagnosis.”
Now both William and Emily are full-time caregivers to their kids. Though they originally lived in upstate New York when Griffin was diagnosed, they moved to Colorado, where Emily says the resources are some of the “best in the nation.”
While she has a “side hustle” selling antiques and makes money from her social media pages, she emphasizes that the state of Colorado “pays caregivers well.”
“I mean, we’re not rich by any means, but they pay a living wage,” she shares. “That’s why Colorado is one of the best places in the states for people who have severe disabilities. They take care of the people and the families, and that’s why if I could give Colorado a hug, I would.”
Still, she also admits it took her a year to process the “grief period” that came with the diagnosis.
“You grieve the life you thought your child was going to have. For some reason, all of us who have children, we all have this vision of our children. We all have this plan, this, like, make-believe blueprint, and when you’re given a child that has a disability that you weren’t expecting, that blueprint disappears,” she says. “You grieve his first date, you grieve his wedding — all of the things, first steps, first words.”
She continues, “Everything just disappears. And so it was devastating, absolutely crushing. I grieved for years. You grieve for absolute years. And even now, I still grieve when there’s a moment maybe his twin goes through something that Griffin hasn’t gone through, I’m like, ‘Man, he’s never gonna do that.’ And it shatters you.”
As Emily and her husband began exploring the various therapies and support options for Griffin, they also learned of Sawyer’s autism diagnosis. Her youngest two were also diagnosed with dyslexia, while Lindy was diagnosed with Apraxia, a neurological condition where a person is unable to perform tasks or movements. Wyn, the second oldest, has CRMO, Chronic Recurrent Multifocal Osteomyelitis, a rare auto-inflammatory bone disease.
“As I am now a seasoned special needs mom, I have learned that Griffin was not meant for that journey, and he is now meant for this journey, and I look forward to now the things that he can do and will do,” Emily continues. “It’s an emotional rollercoaster, and I’m somebody that once I’ve accepted, I’m like, ‘We’re gonna make this the best we possibly can make it because that’s the only way in my mind. I’m not gonna sit in the sad.’ “
Ultimately, Emily says it was her grief journey that led her to make her TikTok and Instagram accounts, where she shares the day-to-day reality as a mom of six children, four of whom have disabilities.
“I really wanted to share this journey because it felt important. It felt like I needed to tell people about what was happening to us,” she says. “I wanted to show that these disabilities are not going to define our family and we’re going to find joy through the crazy hard this is. And my kids, even though they have disabilities, they deserve a quality of life, they deserve to go on vacation — they deserve it all.”
“They’re different, but they’re just like us, too,” she adds. “And I just wanted people to see that we could have it all, even with all this hard.”
Read the original article on People
