Yahoo News Mum praises daughter's 'brave' decision' after 'devastating' news
A mum was 'floored' after her daughter's diagnosis but an upcoming event in Liverpool has 'kept them going'.
Alexa Smith, felt something was not right with her daughter Issie at a young age. Speaking to the ECHO, she said: “She just had a lot of respiratory infections and was very delicate.
“They were the main contributing factors. She also had a cleft palate as well. There were repeat infections, so just lots and lots of antibiotics.”
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At four years-old, Issie was diagnosed with Loeys-Dietz syndrome, a rare condition which affects the connective tissue providing flexibility and strength. This led to her developing a curved spine.
Alexa said: “I knew that there was something underlying, I knew it in my gut. When the diagnosis came, obviously we were floored by it, we were devastated.”
Nevertheless, Alexa was glad to have some certainty over the situation. She said: “When you do get a diagnosis, there's that feeling of being empowered, because knowledge is power.
“We can do our research, we can make sure that we've got the right specialist care for her, and that everything is addressed and monitored. Even though it was one of the hardest times of life, we knew that we were actively doing everything we could to make sure that she had the right care.”
Issie was also diagnosed with cold urticaria, an allergy to cold temperatures. Around two years ago, when her vitals dipped, she was given four units of cold blood. This led to a spinal stroke and aged 13 she was left paralysed.
These events have been difficult for Issie as well as her mum Alexa and dad Ashley. However, there has been one thing that has remained constant throughout her hospital stays, especially after her spinal stroke.
Issie said: “Taylor Swift means absolutely everything to me. I have not had another artist that meant more to me than her. Since I was four when I got diagnosed, to every single hospital appointment, I would play Taylor Swift. That's what's been happening throughout all my appointments and my medical history. It's just been a way of escaping and just finding comfort in the hardest times.”
After she became paralysed two years ago, one song of hers in particular stood out to Issie. Issie said: “My whole focus was on seeing Taylor Swift. That was the only thing that was kind of keeping me through it.
“I was in hospital for four months. Every single night I used to listen to Taylor Swift's album Folklore and it was such a big comfort. It kept me distracted from what was going on in my life. It was like an escape.”
Her favourite song on Folklore was Seven for one crucial reason. She said: “It was the lyrics, the escapism that it brought me. Listening to it, it feels like a whole different world and you're just entranced by it.
“It just felt like an escape from my situation. I always used to have that one song on repeat throughout.”
Issie, along with her mum Alexa and dad Ashley, are from Grimsby. When tickets went on sale for Taylor’s show at Anfield, Alexa managed to get some for herself and her daughter on night two.
Though Seven is not currently expected to be on Taylor’s setlist, the singer often performs surprise songs in gigs, and Issie is hoping Seven will be one of them. She has shared her experiences of living with her health conditions on social media for the first time, as well as explaining her love of the song and asking Taylor to play it.
When asked what it would mean to hear Seven played at Anfield this week, she said: “I don't think I would have the words. I think hearing Seven would be like a full circle moment. All my friends know how much it means to me, so they will be so pleased for me. It would just be absolutely surreal.”
Following Issie's post, other people with the same health conditions as her have got in touch to share their experiences. Alexa said: “Obviously you've got all of the Swiftie support, they've all been wonderful with their kind words and their genuine hope for Izzy to hear something after her struggle.
“To do the post itself was extremely brave for Issie. It's the first time she's put out what's happened to her. To see support from the Swifties, from people that aren't Taylor Swift supporters - they've all come forward and it's like Izzy's created this little community of people that can connect, which has been amazing.”
They are also thrilled to be visiting Liverpool for the first time. Issie and Alexa will be going to the gig. Although Ashley couldn’t get a ticket himself, he will still be joining them in seeing the city.
Alexa said: “We’ll be seeing all the landmarks. It's our first time there as a family, so we just want to embrace it and enjoy the time here. It's going to be really exciting."
Alexa is delighted she will be there with her daughter to see Taylor. She said: “It'll be an amazing pivotal moment for Issie to be able to experience a show like this, to actually be in the same room as her idol. That's been such a big focus for so long.
“There's been so much hardship, there's been so many struggles, but she's been so determined, and she's got resilience like no other. I'm so happy that she's got this evening that she can look forward to and just have a true night of joy.”
