By Scott Thompson
MEET THE inspirational woman who has been admitted to hospital THIRTY-TWO times in THREE YEARS because of a genetic disorder that has left her fighting SEPSIS EIGHT TIMES – and doctors never thought she would make it this far.
Paige Donovan Smith (20) from Auckland, New Zealand, was born with Ehlers-Danlos Syndrome (EDS), a genetic mutation connective tissue disorder, which affects a protein called collagen which helps keep the body together.
She has had EDS since birth, but it didn’t really cause problems until Paige was 15 years old. It was then she began having gastrointestinal (GI) symptoms that were affecting her whole body.
The progression was slow at first but has sped up since she was 18, Paige is now unable eat, has bladder failure, epilepsy, leg paralysis and paralysis of the stomach and struggles with anxiety and autism. She has been admitted to hospital 32 times in three years but has been in hospital on her latest admission for ten months now.
Paige was diagnosed with EDS in January 2019 and said it was a relief because she finally had some answers.
“I’ve unknowingly had EDS since I was born. It is a connective tissue disorder that causes faulty collagen throughout my whole body,” Paige said.
“As a child I mostly just had small problems. Like I’d have broken, sprained or dislocated wrists ankles, knees and shoulders. However, as I got older, when I was 15 my symptoms were becoming severe.
“Some of these were organs causing gastroparesis which is paralysis of the stomach and intestinal dysmotility which means everything I eat makes me throw up because my body can’t process food. I also have epilepsy, bladder failure, leg paralysis, autism and suffer from anxiety.
“I’ve been admitted to hospital 32 times in three years, but considering I’ve now been in hospital for 10 months, most of them visits were in a very short time.
“I’ve contracted sepsis not once, not twice, but eight times in ten months because my conditions make it highly likely for me to get it. Every time has been so close that the doctors have told my parents I probably wouldn’t make it. But I have survived every time.
“Sepsis is awful. It’s like you can’t breathe, you start to shake, and it gave me a fever running at 40.8oC. They pushed antibiotics and pain relief through my injection line that went into my heart and through my whole body which made me lose vision. I was screaming at the nurse that something was wrong as my whole body went into spasm. I couldn’t even right the alert bell.
“All of my conditions have left me unable to walk, eat, drink, or even shower or dress myself and I have now been bound to a wheelchair for the last six months.
“Honestly, when I was diagnosed in January 2019 it was such a relief. I had something I could work with and I actually had some answers which I could hopefully use to work out some solutions.”
Paige’s ordeal has been hard on her family as they were told time and time again that their daughter wouldn’t make it.
She takes 15 medications to manage her condition and she tries to live her life to its fullest regardless.
“My family has struggled to see me so ill and it has affected them a lot. Especially when I’m poorly and they are having to hold me while doctors say I might not make it during my serious infections,” she said.
“I want people to know that it doesn’t matter what medical aids you need or how sick you are or look, those who love you will always be there to care, even though it’s so hard on them too.”
“I’m literally taking over 15 different medications every day now.
“There are no cures for any of my illnesses, so it’s all symptom management, which is honestly hard to cope with. However, I am trying my best to live my life to the fullest as much as I can right now while I can.
“I love watching stuff on Netflix, doing some artwork, journaling and having my friends round to see me.
“I don’t know how much longer I have left, but I’m fascinated with stars and space. There’s just something so magically and mysterious about them and they fill me with great joy and happiness.
“I hope that when I pass, I’ll be able to go up into the stars and dance amongst them.”
You can follow Paige’s journey on Instagram