Brittany Lagarde has always dreamed of her daughter’s wedding day, of her daughter walking down the aisle in her mother’s wedding dress.
That dream won’t be coming true. That’s why, in a now-viral and emotional TikTok video that was posted earlier this month, Lagarde revealed to her followers that she had thrown out her wedding dress.
In the video – which drew in more than 9 million views – Lagarde said her 8-year-old daughter Sawyer was diagnosed with Sanfilippo syndrome, a type of childhood dementia, at the age of 2.
According to Sanfilippo.org.au, Sanfilippo syndrome – or mucopolysaccaridosis type III – is described as a rare genetic condition that causes brain damage. In most cases, children afflicted with this type of dementia never reach adulthood. There is no cure for Sanfilippo syndrome and, according to The National Organization for Rare Disorders, those with the condition live, on average, to the ages of 15 to 20, but sometimes die before the age of 10. The available treatment is “symptomatic and supportive” to help manage children’s quality of life.
Lagarde revealed to Insider that after her daughter was diagnosed, she and her husband did blood tests and learned they each carry the gene that causes Sanfilippo syndrome. According to Mount Sinai Health System, the children of parents who both carry the gene have a one in four chance of having Sanfilippo syndrome.
The couple learned of their daughter’s diagnosis while they were expecting their second child, Zion. Zion doesn’t have Sanfilippo syndrome but was diagnosed with autism at age 4.
In the TikTok video, Lagarde explained her actions.
“I threw my wedding dress away today. I know what you’re thinking, ‘Why would you ever do that?’” Lagarde said in the video. “We’ve saved the dress with intentions that maybe our daughter would want. To wear it someday or hear about our special day or play dress-up with it. Sawyer doesn’t even know what a wedding dress is. My daughter has childhood Alzheimers and her life expectancy is mid to late teens. So, she’s never getting married, so what’s the point of keeping it?”
After, Lagarde spoke to Insider and said she needed to let go of what she had dreamt for her daughter for so long.
“Letting that go was me enjoying the realistic expectations that I have with her now and living for the everyday moments instead of having that cloud hanging over me that she won’t get married. The wedding dress was a reminder of that,” Lagarde said.
When Lagarde married in 2011, she wore a beaded, strapless dress that she found at a Wisconsin shop after it had been returned to the shop when a different bride’s wedding was cancelled. When Lagarde tried on the dress, she said it fit like a glove.
After receiving a ton of praise for her honesty about what she was going through, many TikTok users left comments asking why she didn’t donate her wedding dress. She responded in a follow-up TikTok video on March 5 and said that at the time, she didn’t know about organizations like The Angel Gown Program, which accepts old wedding dresses to make burial garments for babies who died.
But Lagarde told Insider she doesn’t regret her decision.
“I was in the headspace of throwing it away because I saved it with the expectation that [Sawyer] would get married in it one day, and that wasn’t the reality,” Lagarde said. “I don’t regret throwing out the dress because I feel like that was what was best for my grieving process and my expectations.”
Lagarde said her daughter still had her speech and skills when she was diagnosed, but everything changed when she turned 5. According to NORD, children with Sanfilippo syndrome typically lose their speech and other cognitive functions, along with motor skills
“She lost her speech, and that’s when a lot of the brain damage started,” she said. “She has the cognitive ability of maybe a 12-month-old, and she’s 8. She can’t communicate with us what she wants or needs.”
Knowing what’s to come for her daughter, Lagarde vowed to make every moment with Sawyer count and wants to continue sharing on social media what everyday life with Sawyer looks like.
“I want to give people a safe place to know that it’s OK that sometimes life does suck,” Lagarde said. “I don’t know what Sawyer’s future is going to look like. I do know it will end, but I can’t think about that. I know that it’s going to be OK, and that’s why letting my grief out has been the most helpful thing for me.”
Read more via Insider.