'She's such an inspiration': Sunderland dad praises incredible daughter for fighting back against the odds
‘She is truly an inspiration to everyone who knows her, but none more than us her family’
A Sunderland dad has praised his amazing daughter who has achieved a huge milestone despite living with a life-threatening condition.
Most children who have the rare PDHA1 (PDH Deficiency) do not survive beyond infancy.
Her dad Josh Lay, 36, described her as ‘an inspiration. Tiana surprises us daily with her determination and strength. She is truly an inspiration to everyone who knows her, but none more than us her family.
“She mastered the stairs and loves nothing more than going up them. It’s almost a form of training now. She is amazing and we couldn’t be more proud.”
PDHA1 is a gene that acts as a blueprint for a critical protein in your body and if it does not work, it can lead to energy shortage and acid build-up.
Many infants with severe deficiency do not survive beyond infancy or early childhood and Tiana’s family only found out this year that she has the condition.
“Tiana has low muscle tone, PDHA1, epilepsy but she is doing incredibly,” Josh added.
He climbed and descended Scafell Pike 13 times to mark Tiana’s forthcoming 13th birthday and covered around 78 miles with roughly 40,000ft elevation gain. To put that into perspective, it’s almost the equivalent of climbing and descending Mount Everest from sea level 1.4 times.
But Josh revealed the reason why the challenge was so important to him.
“Tiana is non-verbal but she is ‘always has a smile. She loves to smile. She is happy all the time and really bubbly.”
‘It is great for any child to become a teenager but for Tiana, considering the amount of adversity she has to go through, it is a major milestone,” he said.
Josh, who is also dad to Olivia Lay, 9, and Molly Lay, 4, raised more than £8,700 and anyone who would still like to support the cause should visit https://www.kindlink.com/fundraising/The-Freya-Foundation/9687