Woman living with rare condition is an inspiration to many

BROTHER TELLS OF CRUEL CONDITION WHICH LEFT HIS SISTER UNABLE TO SPEAK AND WALK

- By NAOMI CORRIGAN [e-mail] @NaomiCorrigan

WHEN Lucia Lowe started to show signs that she was falling behind in 2002, her family at first put it down to slow progression.

But as the little girl from Great Ayton grew up, her issues gradually worsened until she was no longer able to communicate, walk unaided or care for herself.

Many tests were carried out and, in 2013, she was diagnosed with Tay-Sachs - a rare condition which her devastated family was told would likely cut short her life.

Most people with Lucia’s form of Tay-Sachs do not live past their teenage years. But Lucia is now 25, which her family believes is testament to the young woman's “strength and determination”.

There is currently no cure for the condition which affects the nervous system and causes progressive neurological decline but research is ongoing. Lucia’s brother Loukas has thrown his weight behind The Cure and Action for Tay-Sachs (CATS) Foundation which supports families like his and also helps fund studies into potential cures and treatments.

In April, the siblings were due to take part in the London Marathon together, with Loukas pushing Lucia in her assisted wheelchair around the course in the capital.

However, sadly they had to cancel two days before the event as Lucia fell ill and needed hospital treatment.

"Lucia took a turn for the worse, and was in hospital recovering from a couple of infections, in addition to pneumonia, which are all secondary complications related to her diagnosis," said Loukas.

“She came out of hospital on Thursday and she’s making a good recovery but she’s still on medication at home.”