Scleroderma Took My Sister… Now I’m Carrying On Her Legacy | Grief, Healing & Finding Purpose

**Alex Santana** (0:00)
I kind of feel like, as a brother, it's been my job to kind of take over that and share her story for her. They would say, you'll never be anything, you're just gonna be a fucking hairdresser. So I moved away as if to be like, I'll prove you wrong, watch me, bitch, all that kind of stuff. I mean, all I wanted to do was just try and prove people wrong when I had to prove it to myself. Along that side as well, my sister had just been diagnosed.
Her body's starting to change, her face was changing, so she couldn't even open her Christmas presents. She just, it was like a blank canvas when I saw her. She just didn't have a personality, you know, but it's dealing with some, it's like watching someone die, basically slowly. She didn't have any support there. She felt like she was a scientific experiment, is what she said. Speaking of April 2022, that's the day that she passed away. So I looked to my left and this she was in her coffin. And I just spent about 45 minutes with her, just talking to her. And I said to her, I am going to share your story. I was broke. I had no money. I went to the food bank. I went to therapy.
I was just completely lost. There was no going back for me. No going back whatsoever. That was, I was adamant on that. The biggest reality show that I've done is a series called Love Triangle.

**Lucy Hodgkinson** (1:07)
That's where I saw you.

**Alex Santana** (1:09)
It was like the wish.com version of Married at Birth Site. I should be saying this, but we did something really, really bad.
If production ever finds out, you know, I could feel her energy a lot when she's going to be on us.

**Hana** (1:22)
So can you hear Giselle now? Yes.
What's she saying?

**Alex Santana** (1:26)
So I have to say the proudest thing I've ever done in my life. I'm living my dream right now. I'm quite happy with what I've got in life.

**Lucy Hodgkinson** (1:31)
Literally, she said that.

**Alex Santana** (1:33)
If I can fucking do it, then so can you guys.

**Hana** (1:45)
Hello, and welcome to Becoming Lucy with me, Hana.

**Lucy Hodgkinson** (1:50)
And me, Lucy. So, most of us spend our lives trying to work out who we're becoming. We leave home, we chase opportunities, we reinvent ourselves, we make plans for the future, and then sometimes life takes us somewhere we never expected to go.
Sometimes the moments that shape us, most aren't the ones that we chose. Then the moments that force us to become somebody new.

**Hana** (2:16)
Today's guest is Alex, and you may actually recognize him from TV.
You may know him through his advocacy work on his social media platforms, or perhaps this is your first introduction to his story. But behind every version of Alex that the public sees, there's one role that matters the most. He's a brother.

**Lucy Hodgkinson** (2:35)
In 2022, Alex lost his sister Giselle.
She was 38 years old. He was a daughter, a mother, and a sister, and somebody deeply loved by the people around her.

**Hana** (2:49)
Giselle had been living with a rare autoimmune disease known as Scleroderma, a condition that changed not only her life, but the lives of those who loved her. After years of hospital appointments, treatment, and uncertainty, Alex and his family faced the unimaginable.

**Lucy Hodgkinson** (3:06)
And today we're talking about grief, healing, raising awareness, spirituality, and how sometimes life forces to rewrite the future we thought we were going to have. And how the darkest chapters of our lives can become the ones that change us forever. And this is going to be Alex's story.

**Hana** (3:26)
Welcome to Becoming Lucy, Alex.

**Alex Santana** (3:28)
Thank you so much for having me here. I've been so excited for this. I'm so happy to meet you guys as well.

**Hana** (3:34)
Oh, I know, third time lucky as well. Yeah, a bit of adamant behind the scenes. We tried to do this twice already.

**Lucy Hodgkinson** (3:40)
These two jetted off on holiday.

**Alex Santana** (3:42)
Yeah, that was our bad.

**Hana** (3:46)
Sorry about that. But no, we're super grateful that you've chosen to come on our podcast. And we always like to let our listeners know how we have got in touch with our guests. And sometimes we know them, sometimes we're put in touch with people by various people. And actually, this one is from a listener. So they saw a TikTok video of you.
And they tagged us because you wanted to share your story about Giselle. And you mentioned to us actually before we started recording, that it's exactly what she would have wanted. So we just feel the stars are aligning and they tagged us. And here we are. And you have been doing some fantastic work for your social media platforms. And no wonder you want to share the story. And we are super grateful that you are here. So thank you.