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Madeline’s making a splash

By April 25, 2019 No Comments

Congratulations to 17 year old Madeline from Ipswich who, despite having had a tough two years since being diagnosed with autoimmune liver disease and then chronic fatigue syndrome, has just qualified as a lifeguard.

Proud mum, Natalie takes up the story:

“My daughter Madeline has always been sporty. She has been scuba diving since the age of 11, she loved swimming, hiking and was also a tennis umpire. Her long term plan was to  qualify as a lifeguard, go to university, travel and then start her career in neuropsychology with the NHS.

This was all thrown into question two years ago when, at the age of 14, she began to feel incredibly fatigued . She hid her symptoms pretty well but after counselling for her needle phobia, we managed to get a blood test. This highlighted a problem with her liver and we were told she would be called for an ultra sound scan which would take about six weeks. However she subsequently became so weak that my mum paid for her to have a private scan which revealed that she had an enlarged spleen and needed to be admitted to hospital immediately.

After three days in our local hospital in Ipswich, Madeline was transferred to the specialist liver unit at Kings College Hospital where, following further tests, she was  diagnosed with autoimmune liver disease, a condition we knew nothing about. It was a massive shock for the whole family.

“The next few months were the hardest for all of us. When Madeline first returned home from Kings she was incredibly weak and unable to stand or walk. She could only get out of the house using a wheelchair which was kindly provided by our local doctors’ surgery.

“Madeline suffered chronic pains throughout her body and a reaction to medication which covered her body in an itchy rash for months. She needed daily massaging to help ease the pain. For me this was the hardest time, seeing my 14 year old daughter suffer and unable to be out with her friends. The year after her liver disease diagnosis, we were told that Madeline also had chronic fatigue syndrome. Sometimes she was so weak with both conditions that just walking up the stairs was an effort.

“Over a matter of months Madeline gained small progress but was still unable to attend her last year at school. Eventually she was home tutored for just two hours three times a week.

Our lives were on hold, we turned down wedding invitation, parties, cinema trips and much more. We only seemed to go out to attend hospital appointments. It was a very isolating experience.

“Her struggle with both conditions began to make Madeline’s original ambitions look like a bit of a dream but I underestimated her determination!

“In June this year she passed her BTEC Art course at college and is now studying A levels in Ancient History and Psychology. Even though she can only manage half of the normal timetable, the staff at Suffolk One college are so supportive, we are confident of a good outcome.

“The opportunity to qualify as a lifeguard has been a real boost to Madeleine and something which came about through a scheme run by Suffolk Sport in partnership with Ipswich Borough Council. The idea is to provide the necessary entry level skills to students who want to start a career in the leisure industry.

“Despite her health problems, Madeleine was one of just three students selected to complete the National Pool and Lifeguard qualification and she now has a part-time job as a lifeguard at a local private school.”

Although the last couple of years have been something of a rollercoaster, Madeleine is philosophical about her situation:

“When I first got the diagnosis, I just felt relieved to finally know what was wrong with me” she says. “I felt like I had been in hospital for ages and I just wanted to go home.

“I do appreciate that having these two conditons means that some things might be more difficult for me but if there is something I think I can do then I want to do it. It’s why I was so determined to complete the lifeguard course. That has certainly given me a boost and over the past few months I’m beginning to feel that I’m enjoying life more and getting back on track with my plans for the future.

“CLDF has been a real help to me with information about all aspects of living with a liver condition. I know my mum  particularly valued the info she received soon after my diagnosis when she so needed information about my condition and what it meant for us.

“I know that in those early days, my mum took great comfort from reading positive stories of other young people with liver disease and we both hope that my story will bring the same comfort to other parents.”

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