A PAIR of first-time parents have praised a charity which has allowed them to stay close to their baby daughter while she receives treatment at Sheffield Children’s Hospital.
Elizabeth Lowe gave birth to little Alexia at the end of last August and was almost immediately diagnosed with coffin-siris syndrome, a rare genetic disorder which causes development problems, respiratory infections, feeding difficulties and mental retardation.
The eight-month old has spent her entire life in the city’s Children’s Hospital – and thanks to the support of the Sick Children’s Trust mum Elizabeth and dad Kevin, who live in Chesterfield, have been able to stay at her side throughout it all.
The couple have been staying at Treetop House, run by the trust as part of its national network of ‘homes from homes’ close to hospitals.
Elizabeth, aged 21, said: “We had been so excited about starting a family but soon after she was born we realised something was wrong. It wasn’t long before doctors began carrying out tests and diagnosed her with coffin-siris syndrome.
“I couldn’t bear the thought of leaving her and thankfully we didn’t have to. Without the help of The Sick Children’s Trust I simply wouldn’t have been able to be there for Alexia every day.”
Although the family are desperate to take Alexia home with them, it remains a distant prospect since she still requires long-term ventilation.
“The past eight months have been challenging and we just want to go home and be a family but it doesn’t look like that will happen any time soon,” Elizabeth said. “So for now, Treetop House is our home and at least that is one thing we can be grateful for.”
Visit www.sickchildrenstrust.org for information.