Between the ages of 11 and 13, Sophie Washington was taken to A&E an astounding 187 times.
Without urgent treatment from doctors during each visit, her vital organs would have shut down and she would have died.
Despite everything she has endured in her short life, she remains determined not to let her complicated condition define her.
“Everyone says how positive I am because I’m always smiling. Only the people closest to me see that isn’t always the case,” said Sophie, now 23.
“I have my miserable days – everyone does – but I have always said I would rather spend my time smiling or laughing than crying.
“Life is going to happen either way and you might as well make the best of it.”
When she was nine years old, Llandeilo resident Sophie was diagnosed with type 1 diabetes .
While the condition can be controlled with the right medication, it soon became clear that Sophie’s case was far from typical as her body was developing antibodies to insulin.
She added: “My blood glucose levels were impossible to control and I was admitted to hospital frequently due to both dangerously high and low glucose levels.
“The diagnosis was eventually changed to brittle diabetes, and I have since also been diagnosed with hypermobility syndrome, complex regional pain syndrome, functional neurological disorder, non-epileptic seizure disorder and fibromyalgia.
“I use a wheelchair or mobility scooter to get around as I am unable to walk any kind of distance and fall over frequently.
“I’m in almost constant pain and there isn’t a day where I don’t experience multiple symptoms – be that seizures, spasms, numbness, falls, sickness, dizziness or fatigue.”
At a time when most children are looking forward to starting high school, Sophie was fighting for her life on an almost daily basis.
“I was admitted on average two to three times a week to my local hospital for emergency treatment. I usually spent around 24 to 36 hours in each time,” she added.
“When your glucose levels go too high, your body develops something called ketones which causes your body to go into acidosis.
“Without urgent treatment, this would lead to multiple organ failure and death.
“Your body needs glucose to function – when your blood glucose levels go too low, it can cause seizures, permanent neurological damage and death without immediate treatment.”
At the age of 15, Sophie was the only person in the UK living on an intravenous insulin infusion 24 hours a day, seven days a week at home – a situation she lived with for 18 months.
During that time she said hospital stays “became the norm” and nurses were required at home to support her family in caring for her overnight.
She said the condition has greatly limited her ability to exercise.
“In 2006 I ran the Great North Run and now I can manage a few steps with a walking stick on a good day,” she said.
“I used to absolutely love dancing, but can’t really any more, although I’ve recently heard about ParaDance so am looking forward to exploring the possibilities.”
In 2012, Sophie joined the transplant waiting list for a new pancreas – and 18 months later the call came.
“I was 18 when I had the transplant – the youngest pancreas transplant recipient in the UK at the time,” she said.
“It was December 2013 when my mum got the call just before midnight. She woke me up asking what I’d like for Christmas and I mumbled ‘a new pancreas’.
“We were taken to hospital by RAF helicopter so it was all rather dramatic. There was an overwhelming surge of emotions because while your dream is coming true, you know it’s because another family are going through the worst time imaginable.”
She added that the recovery process was tough and there were some major setbacks along the way, including early signs of organ rejection that were picked up during a routine biopsy.
While she was able to return home from hospital in February 2014, the pancreas only lasted three-and-a-half years and failed in October 2017.
She needed emergency surgery to remove the pancreas as its cells had started to die.
“My health isn’t great, which is a massive understatement. Since my transplant failed I’ve been admitted to various hospitals multiple times.
“I’m on holiday at the moment and having a wonderful time but unfortunately I can’t take a break from my health – it follows me everywhere.
“I had a full suitcase just for my medications. My health (or lack of it) is exhausting, but until I stop breathing I won’t stop living. It’s not easy but nothing worth anything in life is.”
Sophie paid tribute to her family, boyfriend and other friends she’s made during her frequent hospital visits.
“I don’t have as many relationships as a lot of people, but the ones I do have are special,” said Sophie, who was forced to miss five years of school.
“I’ve lost touch with most of the people I went to school with, but have met some incredible people who I am proud to call friends in various hospitals. We don’t necessarily get to see each other very often, but we know we will always be there for each other.
“My family has always been incredibly supportive – I wouldn’t be here without them – and I have a wonderful boyfriend.”
Despite her chronic ill-health, Sophie is now gearing up for the 2019 Westfield Health British Transplant Games in Newport between July 25 and 28.
With remarkable determination, she is set to represent Wales in archery, table tennis and swimming.
“It’s really wonderful to be able to come together with hundreds of other transplant recipients and compete in various sporting events.
“It’s a celebration of life, and incredible to think we are all still here thanks to the generosity of our donors and their families. I haven’t been well enough to compete for the last few years, so I’m just hoping this year is different.”
More stories on organ donation
The Westfield Health British Transplant Games will see almost 1000 participants – some as young as three – taking part in 23 sports and events across the city. Each of them, including Sophie, have had lifesaving transplants.
The aim of the games – organised on behalf of charity, Transplant Sport, is to raise awareness of the importance of organ donation.
Wales was the first to introduce a soft opt-out system of the organ donor register. However, the decision on organ donation is still made by loved ones.
That’s why organisers are keen to spread the word that you need to make your wishes – whatever they may be – known to your family.
As of December 31, 2018, there were 232 patients in Wales waiting for a transplant. In the first three quarters of 2018-19, 19 patients died while on the active waiting list.
You can register a decision at any time at any age by calling 0300 123 23 23 or visiting https://beta.gov.wales/talk-about-organ-donation-campaign or by telling your family and friends.