At just four days old, Lara went into a coma. She was soon diagnosed with a life-threatening metabolic disorder. Her mum Julie tells us about their time at Great Ormond Street Hospital (GOSH) and how they manage Lara’s condition.
Lara and her family were living in Portugal when she got sick. They immediately went to their local hospital, where a specialist diagnosed her with methylmalonic acidemia (MMA), a condition which means the body doesn’t process protein properly, so the protein in milk was making Lara ill.
“It was all a bit surreal,” says Julie. “You wait nine months to have a lovely bouncing baby, but she was only like that for three days.” The family decided to move back home, and Lara was admitted to GOSH for treatment.
Julie describes what it’s like to come to GOSH: “It was really nice to come to GOSH. We have been visiting regularly for the past 11 years. At the moment, we come once a month to have Lara’s feeding tube changed and to see a dietitian.”
“I used to feel sick a lot and have tummy aches,” says Lara, “but we came to GOSH to get a new tummy tube so I can have my meals and medicines.” Lara has also been an inpatient on Rainforest Ward.
Lara takes 13 medications each day. Julie explains how they manage this: “We have a list in the kitchen with what needs to be taken when so we can keep track of it.” At the moment, Lara has a portacath® for when she has blood tests. “She has had so many that her veins collapsed – the port means they can do tests more easily.”
While staying at GOSH, Lara visited the Activity Centre and the School. She says: “My favourite lesson is art – I really like painting, drawing and colouring.” Lara is a member of the Brownies and got special GOSH badges to add to her sash. She has also seen quite a few celebrities, including Alan Carr, Jessie J, Paul McCartney and The Wanted.
Looking ahead, Julie says “the next big hurdle is Lara’s kidney transplant. It’s all set up now – her dad is donating his kidney, but it has to be done at the right time.”
Advice for other parents
Julie encourages other families to stay positive: “At the beginning you can’t see any upsides. We make regular trips up to the hospital, but you get used to dealing with it. We try to make the most of the visits by going shopping or to the theatre.”
“Try not to be too daunted by it all – everyone is really friendly and there are so many things for children to do,” says Julie.
Coming to hospital can be a nerve-racking experience, but Lara has some advice for anyone about to visit GOSH: “Don’t be scared, and remember to pack an iPod, phone or tablet, headphones and a cuddly toy.”