Mum given support after tot diagnosed with liver condition
MEGAN Thomas is not just one in a million – she’s even more unusual than that.
The two-year-old suffers from a liver disease so rare that she is one of only two people in Scotland to have it.
But the toddler – who could face a liver transplant when she is older – is currently doing well thanks to medication and a restricted diet.
Now her mother is hoping to give something back to the charity that has helped her by holding a fundraising ball.
Helen Thomas, 33, aims to raise thousands of pounds for the Children’s Liver Disease Foundation (CLDF) through the event at the Barcelo Carlton Hotel, on North Bridge, next month. “The charity is very personal, they make a big effort to make you feel part of something and give you emotional support,” she said.
Her daughter’s condition, known as tyrosinaemia, is a metabolic problem which means the body is unable to break down the amino acid tyrosine. Left untreated, it can be fatal, and until recently the only treatment was a liver transplant.
Mrs Thomas, a clinical trials project manager from Currie, said: “As a baby, Megan never fed all that well and she never really took to solids brilliantly, apart from fruit and vegetables.
“She didn’t grow as much as she should have done and then when she started nursery at ten months she picked up lots of bugs and wasn’t getting over them. She just got very ill and we went to the GP and they looked at her shape. She had very, very skinny arms and legs but a really big rib cage, because her liver was twice the size it should have been.”
She and her husband, Craigmount School PE teacher Calum Thomas, stayed at the Sick Kids Hospital with Megan for two weeks as doctors ran test after test.
Megan is now doing well on a very restricted diet. Mrs Thomas said: “She doesn’t eat protein – it’s basically a vegan diet but without pulses or nuts or soya. She can eat most fruit and vegetables and she has very measured amounts of pasta and rice, and then she has a lot of prescription products which are protein-free, and gel solution which gives her all of her amino acids.
“She’s doing very well, they’re really pleased with her. She takes medication which has only been licensed for five years, so we’re extremely lucky that it exists, because before that the only treatment was a transplant. Her liver is significantly shrunk now, it’s not normal, but it’s better than it was.”
The couple, who also have a nine-month-old daughter, Holly, said the CLDF had made a huge difference to them as they learned to cope with Megan’s condition. Mrs Thomas hopes to raise up to £4000 for the organisation at the ball.
CLDF chief executive Catherine Arkley, said: “We rely on community fundraising for 75 per cent of our income. We are delighted that Helen has chosen to do this for us and appreciate the huge amount of work which goes into organising an event like this.”
The black tie event will take place on Saturday, February 25. Tickets are £50 and include a “fizz” reception, three-course meal and half-bottle of wine. There will be a band, ceilidh and raffle.
For more information and tickets, contact Mrs Thomas on 0131-449 6577. For more information on CLDF, visit childliverdisease.org.
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