Cork mum writes book inspired by son with rare condition

Douglas woman Lorraine Spillane tells CHRIS DUNNE about her son’s battle with a rare condition, and her new book about her life
Cork mum writes book inspired by son with rare condition
Kevin and Lorraine Spillane and their boys, 

LORRAINE Spillane is just wild about Harry.

The youngest of her three boys, five-year-old Harry is Lorraine’s little trooper.

“Harry is our gift, “says Lorraine, from Douglas. “He is in a league of his own, full of charm, drawing people in like a little ambassador. The world is his oyster.”

The copper curly-haired youngster with the dancing brown eyes was born with a rare metabolic condition where the body cannot break down a protein-building block called tyrosine.

This creates a build-up of toxic products in the liver, kidneys and brain.

Despite this setback, Harry is quite a character and has inspired his mum to write a book, Mum On The Run, sharing how she lives in the moment.

“I’m just a regular mum doing what every other mum in the world does, juggling it all,” says Lorraine.

“Harry’s condition has taught me about what is really important in life and has made me realise that we all have a choice as to what kind of life we want to lead, and I have chosen one of total happiness.

“Harry has inspired me to share my thoughts about how I navigate my way in this crazy world in the calmest happiest possible way, while embracing the challenges along the way.”

Lorraine’s days are made up of calculating and measuring foods and reading labels from top to bottom.

Harry cannot eat meat, fish, eggs or cheese, nor can he drink milk. He has to have 13 grams of protein a day, which is carefully calculated by his mother.

“Harry has to take medication twice daily, morning and evening, 12 hours apart,2 she says.

The little boy understands that he has ‘a special tummy’.

“We have never had a tantrum over food,” says Lorraine, who is justifiably proud of her three boisterous, lively boys, Niall, aged 10, Darragh, aged eight and Harry.

“Niall often gets the weighing scales out weighing the food Harry can have, while Darragh sets the table. Eating and talking around the dining table is important to us as a family.”

The family are strong believers in magic.

“If you don’t believe in magic, then good things won’t happen. Those who don’t believe in magic will never find it,” says Lorraine, who also tells her boys to look out for a special character in the sky.

Harry Spillane, who was born with 
Harry Spillane, who was born with 

“Keep looking for that man in the moon!” says Lorraine, smiling.

Her youngest son is quite the character.

“He’s certainly not shy and likes to make his presence felt; he has a word for everyone along the way.”

Lorraine vividly recalls the day he came into the world.

“I knew the minute this boy was born, with his brown eyes and long dark eyelashes, that this was the start of his uniqueness and he was certainly going to make his mark in the world. That he has certainly done.”

Harry made his mark from day one.

“He decided to make quite a dramatic entrance into the world and this really was a sign of the way he was going to live his life — with a difference,” says Lorraine.

“He was only the second case of his condition in Ireland when he was diagnosed. I genuinely believe the stars were shining on him, as he was diagnosed with Tyrosinaemia Type 1 when he was only six days old,” says Lorraine.

Missing an enzyme to breakdown protein means Harry’s diet is carefully monitored and managed.

“No surf and turf for this guy!” says Lorraine. “He’s an avid vegan without the protein.”

Lorraine clearly remembers the call five years ago when she was told her son was unique; the call that changed the Spillanes’ lives forever.

“I can remember the day so clearly that I received the call telling me that Harry had a rare condition and that I needed to return to the hospital immediately as he would need to go to Temple Street straight away.

“That was the moment that our lives changed forever.”

“It was such a bright sunny day, but my heart felt so heavy,” recalls Lorraine.

“We spent a number of weeks in Temple Street Hospital with an amazing team of doctors and nurses. It was all very surreal in that we had this beautiful baby boy who looked so healthy on the outside that I just couldn’t actually believe that he had this rare medical condition on the inside, that could affect his brain, liver and kidneys, that is life-threatening if not treated.”

Lorraine and her husband Kevin’s magical world changed very quickly.

“We now had a family of five altogether, which is a fabulous change in itself, but we also had to accept that Harry was born with this very rare condition that would require lifetime care,” says Lorraine.

It was a bitter pill to swallow.

“I found it all this very hard to accept,” says Lorraine.

“But mostly the fact that Harry would need life-long medication.”

Lorraine had in-built resources to rely on.

“I realised that Harry’s condition was outside of my control, but what I do have control over is how I approach his condition.

“When I accepted this, I was in a much better position mentally to really start caring for Harry.”

She believed her family had been given a magical gift.

“I believe that everybody’s life is packaged differently and Harry was a gift given to us, to show us how to lead the most fulfilling, uncomplicated life, with lots of contentment and gratitude ,including special memories.”

Having fun in the park, at the tennis club or playing in the school-yard... nobody would guess the close-knit family have a unique boy in their midst.

“Nobody knows what goes on in our lives,” says Lorraine.

“When I was jotting down notes for my book, I noticed my notebook had ‘don’t judge the book by the cover’ on the front. How true is that?

“One morning while out for a run, I saw everyone frantically trying to beat the traffic, making time to be on time for work, school, or college. People in their cars seeing me running carefree, probably thought, it’s fine for her. She has no worries or urgent deadlines to meet. People often have the wrong perceptions of others, judging the book by the cover. That was my light-bulb moment to start writing the book.”

And Lorraine had good motivation.

“I thought, will I? Won’t I? Then I thought, I have to, for Temple Street Hospital and for Harry.”

Just like everyone else on this planet, Lorraine has concerns for the wellbeing of her loved ones and for the future. She has the right attitude she wants to share with others.

“Harry has inspired me to write this book so I can share how I live in the moment, how I’m fully present with myself and my children. How I enjoy the simple things and live life without any regrets.

“Life is so precious and it’s so important to create a life that is full of purpose and meaning, filled with positivity, kindness and gratitude for everything you have.

“It is the simplest things that are special and will bring the most happiness and contentment to your life.

“Sometimes, we are constantly searching for the perfect life. But when we stop searching and appreciate what we have, we realise that the perfect life is right in front of our eyes.”

Lorraine loves Harry to the moon and back.

“He is our wonderful rogue who has changed our lives for the better and who inspires me every day.”

Mum On The Run is written from the heart, where Lorraine shares her positive thoughts and lifestyle tips aimed at mums who are juggling day-to-day family life, striving for work/life balance in today’s modern chaotic world.

“It’s about calming the chaos, avoiding distractions and achieving a sense of contentment,” says Lorraine.

“It’s about being the best you can be, no matter what your circumstances are, whilst being true to yourself as a person.”

It’s about finding the magic.

“Dream big and reach for the stars!” says Lorraine.

“And never stop looking for the Man in the Moon.”

Mum On The Run by Lorraine Spillane is dedicated to Harry. Profits from the book, which will be available from November, will be donated to Temple Street Children’s Hospital who look after Harry.

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