THE father of a toddler who could die every time she cries is gearing up for a charity cycle around Wales.
Three-year-old Tianna Lewis McHugh suffers from reflex anoxic seizures (RAS), which are brought on when she cries or is shocked by something.
During a seizure, Tianna’s heart stops and her parents Ceri Lewis and Andy McHugh, of Brymbo, have to frantically make sure their daughter starts breathing again.
Now Andy and eight of his friends will be cycling more than 870km around Wales, starting and ending at Wrexham.
The cyclists, dubbed The Fundracers, will be raising money for a variety of charities, including one supporting Tianna’s condition, called the Syncope Trust And Reflex Anoxic Seizures (STARS).
Andy McHugh, a salesman, said that luckily his daughter has not had a seizure for about four or five months.
The last one Tianna had was at Cheshire Oaks, Ellesmere Port, in November.
The seizures cause Tianna to appear to “die” because she goes a deathly grey, her eyes roll back in her head and she has a fit.
Andy said: “She’s been grand and has already turned into a stroppy teenager at the age of three!
“She has not had a seizure for a while, touch wood.
“It’s the longest she’s gone between having one or even being close to having one.
“As they say at STARS, you can grow out of it.
“I think when she has one, she is making more effort to take a breathe rather than holding her breath and forgetting about it.”
Last year Tianna appeared on This Morning with Holly Willoughby and Phillip Schofield, along with her parents, to talk about the rare condition.
She also appeared on a morning news programme for American TV network CBS in November.
So far, The Fundracers have raised more than £10,000 between them.
The cycle will take them six days in total and will go via Pwllheli, Aberystwyth, Carmarthen, Cardiff and Llandrindod Wells.
If you can help support the group, go to www.thefundracers.com
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