- TikToker Brittany Lagarde said she threw out the
wedding dress she had been saving for her daughter. - Lagarde says it's her way of grieving that she likely won't see her daughter, Sawyer, get married.
Brittany Lagarde dreamed of passing her wedding dress down to her daughter one day.
But in a now-viral TikTok video from March 4, Lagarde told her followers that she had thrown out her wedding dress as she likely won't see her daughter get married.
In the video — which had over 9 million views at the time of writing — Lagarde said her daughter, Sawyer, now 8, was diagnosed with Sanfilippo syndrome, a type of childhood dementia, at the age of 2.
The National Organization for Rare Disorders (NORD) describes Sanfilippo syndrome — or mucopolysaccaridosis type III — as "a rare genetic condition that causes fatal brain damage." There is currently no cure for Sanfilippo syndrome and those with the condition live on average to the ages of 15 to 20, though death can occur before the age of 10, according to NORD. The same source says treatment is "symptomatic and supportive" to help manage children's quality of life.
Brittany Lagarde's TikTok about her daughter's illness went viral
@happylagardeless the losses are endless w/ Sanfilippo.. #sanfilipposyndrome #OutlanderChallenge #fypvirall #terminalillness #griefjourney ♬ Can't Help Falling in Love - Haley Reinhart
"I threw my wedding dress away today. I know what you're thinking, 'Why would you ever do that?'" Lagarde, who had 187, 600 followers at the time of writing, says 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," she added. "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?"
Speaking to Insider, Lagarde said she needed to let go of the idea of her daughter wearing her wedding dress.
"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," she said. "The wedding dress was a reminder of that."
Lagarde told Insider she got married in 2011 wearing a beaded, strapless dress that she said she found at a Wisconsin shop. She added that the gown had been returned to the shop after a different bride's wedding was canceled. When Lagarde tried the dress on, she said, it fit like a glove.
After Lagarde shared the video, many TikTok users left comments — at the time of writing, there were 7,408 comments on the post — with some praising her for being honest about what she was going through. Others asked why she didn't donate her wedding dress.
Lagarde posted a follow-up TikTok video on March 5 in response, and said that at the time she didn't know about organizations like The Angel Gown Program, which accepts old
@happylagardeless I love you all so much for the suggestions but it’s gone and it’s ok. It was healing.♥️ #OutlanderChallenge #sanfilipposyndrome #fypvirall ♬ Sad Scene BGM Piano Instrument(313618) - HomeMadeGarbage
Lagarde told Insider she doesn't regret her decision to get rid of her wedding dress.
"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," she 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."
Sawyer's diagnosis changed the family's lives
Lagarde told Insider that after Sawyer was diagnosed, she and her husband did blood tests and learned they both carry the gene that causes Sanfilippo syndrome. According to Mount Sinai, the children of parents who both carry this gene have a one in four chance of having Sanfilippo syndrome.
Lagarde said she and her husband learned of Sawyer's diagnosis while they were expecting their second child, a boy named Zion, who was born in 2016. Zion doesn't have Sanfilippo syndrome, but he was diagnosed with autism when he was 4, Lagarde said.
Lagarde said her daughter still had her speech and a lot of her skills at the time of her diagnosis, but that changed when she turned 5.
"She lost her speech, and that's when a lot of the brain damage started," she added. "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." According to NORD, children with Sanfilippo syndrome typically lose their speech and other intellectual functions as well as their motor functions.
Lagarde is focused on making every moment with Sawyer count
Lagarde said she plans to continue sharing what everyday life with Sawyer looks like because she wants to normalize grieving.
"I want to give people a safe place to know that it's OK that sometimes life does suck," she 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."
Lagarde said she's continuing to focus on giving Sawyer the best life possible right now. Since Sawyer's diagnosis, Lagarde said she and her family have taken Sawyer to Disney World and traveled all over the country with her.
"Being able to grieve her, but also make life special with her, make memories with her, I think is what's helped me go on," she said. "We want to make sure every moment counts."