Social media influencer Sara Bennett passed away earlier this month, aged just 39, following a long battle with Amyotrophic Lateral Sclerosis (ALS).
The devastating condition, which gets progressively worse, affects the entire body. And while it started out as a numb hands, it left the mum-of-two needing a wheelchair.
But following her diagnosis in 2022, Sara opened up to her thousands of followers about her traumatic journey, in a hope of shining a light on the terminal illness, which affects around 1/400 people.
Last year, in preparation for her own death, she even revealed on her page that she had done a 'dry run' of her funeral.
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Writing on her Instagram account, she said: "I did a dry run of my End Of Life Ceremony this month.
"I ugly cried the whole time, but It was also beautiful. I get to know exactly what my loved ones will hear that day. As a Type A, who could ask for more? It’s comforting.
"The idea of a traditional funeral just doesn’t feel 'like me'. I know it is sad, I am not trying to make it easier. I just want to reframe it, and I won’t let fear or discomfort keep me from the chance to do this."
What is ALS and what are the symptoms?
ALS - also known as Lou Gehrig's disease - is a progressive neurodegenerative disease that destroys your motor neurons, which control how the body moves.
Some of the symptoms include muscle weakness, paralysis and even respiratory failure. It can cause loss of movement, speech, and breathing control.
According to the Mayo Clinic, ALS 'often begins with muscle twitching and weakness in an arm or leg, trouble swallowing or slurred speech'.
Eventually, however, it 'affects control of the muscles needed to move, speak, eat and breathe', and there is no known cure.
Sara's first symptoms
In his wife's memory, husband Rusty Bennett shared their story with People, in the hope it can lead to more people to seek help against this scary disease.
Looking back, he recalled how Sara was just going about her business, grading some of her students' papers, when she noticed a 'weird numbness' in her hands wasn't going away. They didn't think much of it, and even doctors were initially baffled, before suggesting that the issue could be located in Sara's brain or spine, and was very serious.
"That's when the, pardon my French, 'Oh, sh*t' started," said Rusty, who recalled the examinations that followed.
"It's a miserable journey. There's just no way. ALS is disqualifying 1,000 things."
The team working with Sara had to test for cancer, multiple sclerosis and other diseases before they could say for sure it was ALS. All the time, the family were thinking of and preparing for the worst-case scenarios.
What is the life expectancy for someone with ALS?
The average life expectancy is two to five years after diagnosis, although some people do live longer. After rigorous testing, doctors came to the conclusion it was ALS and told Sara she likely had a limited time left with her family.
Once Rusty and Sara realised just how serious ALS can be, they started getting the word out on social media, speaking openly about how ALS was affecting her everyday life. She started publishing to her pages at the Ananda Edit, before changing her social handles to @TheAnandaPivot. The pair were hoping to open up honest conversations about ALS and were trying to make something positive of an awful situation.
Rusty had to give up his job as a consultant to become Sara's full-time caretaker. By summer, the family was preparing for the end of their mum's life.
The dad-of-two revealed the chats with his kids about their mum's condition were 'the worst conversation he's had to have in his life', but complimented his kids on how well they handled it.
Despite the doctors estimates, Sara defied all expectations after she made it through to Thanksgiving, Christmas, Rusty's birthday on 31 December, and even New Year's Eve.
Rusty said: "It was awesome. We got to watch the ball drop. Sara was in our primary bedroom; she wasn't really able to go anywhere for the last couple of months, but we just partied right there in the bedroom."
Before she passed, Sara set up a fund for to help their kids, Lincoln, 9, and William, 7 to get a college education.
If you have the means, you can donate to that by clicking here and using the UGift codes L4R-R63 for Lincoln and T46-E6P for William.
Sara's final message
On 13 January 2016, Sara posthumously announced her death on her Instagram page.
Accompanied with a picture of her smiling, she wrote: "I am not in pain, or tired. I can laugh, talk, and I can move. Reflecting in my last few months of my life, I am glad I didn’t go suddenly even WITH the suffering. I finished my list.
"Even if you don’t believe in any thing, I am feeding the earth, and my tree. I loved this life, and am grateful for the time."
Last year, Euphoria star Eric Dane revealed that he had also been diagnosed with the devastating condition, opening up about how it had impacted his physical movement and quality of life.
And he too has used his platform to raise awareness, telling his fans that he wants to 'ring every bell' and make the most of the time he has left with his family.
Sharing an update on his condition, Patrick Dempsey, who starred with Dane in Grey's Anatomy, told Parade: "I spoke to him a few weeks ago. I’ve been texting with him. We were trying to get him in [Killer] but unfortunately, the progression of his disease made it virtually impossible.
"It’s heartbreaking. It really is. For him and for his family. You feel for them when you see this terrible disease and how quickly it attacks the body. But he’s bringing a lot of light to that, and he’s using his platform in a positive way. I wish him the best."
You can find out more about ALS at the MND Association by clicking here
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