Lilah Smoot, two, had a seizure at home and an MRI scan found she had a tumour on her brain which, although was removed, led to the diagnosis of a very rare cancer
A mum thought Taylor Swift’s $100,000 (£75,000) donation to her daughter’s GoFundMe amid her gruelling cancer journey was a joke.
Katelynn Smoot’s life was shattered when her then 18-month-old daughter Lilah was diagnosed with ATRT — atypical teratoid rhabdoid tumour — a very rare and aggressive tumour. She shared her family’s journey on Instagram and TikTok, and a video of her toddler dancing to Swift’s tune Fortnight.
Within days, Swift, 35, donated the huge sum to the fundraiser, increasing its value by one third instantly. Lilah’s family can now afford the treatment she needs to save her life. Mum-of-two Katelynn said: “Knowing that she (Swift) saw our video makes me so happy.
“The donation is incredible — it helps us so much — but the fact that she took the time to watch, to care, to send that message… it means everything. Her donation started this, and the Swifties took it and ran. They’ve almost doubled her donation now. I feel like I can’t say thank you enough.”
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As ATRT is so rare, there is only one known treatment pathway — and it involves two rounds of induction chemotherapy, three rounds of high-dose chemo with stem cell rescue, and six weeks of proton radiation. The family’s closest children’s hospitals do not offer all of the treatment plan, such as the proton radiation.
“With Lilah’s cancer, if you don’t treat it, there’s a 100 percent chance she’s going to die. Because it’s so rare, there aren’t many treatment options — there’s really only one protocol that’s been used for the past 25 years, ” Katelynn, from North Carolina, continued.
The brave youngster has taken all the challenges in her stride and, earlier this month, was filmed by her mum dancing to Fortnight. Mid-dance, Lilah, now two, looked at the screen and declared: “That’s my friend.” Katelynn posted the adorable clip on social media.
Katelynn added: “I didn’t even realise what she said at first… I asked, ‘That’s your friend?’ and she said, ‘Yeah.’ And honestly, it feels like they really are… I joked to my husband, ‘People really think Taylor’s going to see this.’ He told me, ‘You never know.’ But I had no real hopes she actually would.”
And Swift, who has won 14 Grammy Awards, had spotted the video. Katelynn’s husband Tyler saw her donation, and rang his wife to tell her the news. Katelynn was sure he was winding her up, but a message on the GoFundMe page less than one hour later left her staggered.
The mum told People: “At first, I thought he was joking. For about 30 minutes, we questioned if it was real. But then we saw it come through on the back end of GoFundMe, along with a message that said, ‘Sending you the biggest hug to my friend Lilah.’ That’s when I knew Taylor really saw the video — and she meant it.”
When they filmed a thank-you message, Lilah saw the artist on the iPad and once again said: “That is my friend.” Although the family has had no contact with the singer, they expressed their gratitude last night.
“She’s a very busy woman, and what she did was more than enough. I just hope she knows how grateful we are. It felt like she gave us the biggest hug,” added Katelynn.
“To be completely realistic about my hopes and dreams for her (Lilah), it’s just that she has a happy life — no matter how short or long it might be,” she says. “I want it to be filled with memories, experiences, and joy… I just want her life to be joyful.”
Less than 60 children are diagnosed with ATRT every year in the US. The fast-growing cancer typically is only diagnosed in kids aged three and younger. To donate to Lilah’s appeal, visit this link.