Home comfort for first time mother as her baby girl battles a rare condition


Giving birth to a beautiful baby girl only to discover that she is seriously ill is a distressing thought. Having to leave her each day to spend the night apart is almost unbearable. But this was reality for one young family before The Sick Children’s Trust stepped in and helped make a terrible situation a little easier to endure.

21 year old Elizabeth Lowe’s daughter was born on 31 August 2010 and has spent her entire life in Sheffield Children’s Hospital. 8-month old Alexia was diagnosed with Coffin-Siris Syndrome almost immediately after birth. Children with this rare congenital disorder suffer from a range of developmental problems as well as frequent respiratory infections, feeding problems and mental retardation.

Soon after birth it became clear that Alexia wasn’t coming home anytime soon. For parents Elizabeth and Kevin who live in Chesterfield, the thought of leaving their little girl on her own was simply agonising but due to one national charity, they have been able to stay by her side as she undergoes life saving treatment.

With 13 cosy family bedrooms each with a direct line to hospital wards, Treetop House in Sheffield is part of The Sick Children’s Trust’s national network of ‘Homes from Homes’ provided for parents of sick children staying in nearby hospitals.

"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 on our baby Alexia 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 as a mother should be."

Elizabeth and Kevin with their daughter Alexia at Sheffield Children’s Hospital

Although Elizabeth is anxious to go home it seems a distant prospect as Alexia remains on long-term ventilation.

"The past 8 months have been challenging and we just want to go home and be a family but it doesn’t look like that will happen anytime soon," she said. "So for now, Treetop House is our home and at least that is one thing we can be grateful for."

In April, national law firm Simpson Millar LLP launched a charity campaign in support of The Sick Children’s Trust and donated £25,000 in sponsorship of their ‘Homes from Home’ in Sheffield, Leeds and Newcastle.

Neil Fearn, Head of Neurotrauma at Simpson Millar LLP said: "The Sick Children’s Trust’s ‘Homes from Home’ are absolutely invaluable to parents of seriously ill children and we want to do our bit to help keep the doors open."

The Sick Children’s Trust is a charity which provides free, high-quality ‘Home from Home’ accommodation for families whose children are seriously ill in hospital. Completely reliant on donations with no government funding available, The Sick Children’s Trust offers 102 bedrooms every day of the year and since its foundation in 1982, has housed more than 35,000 families. Simpson Millar’s sponsorship will go towards meeting the £1million needed per year to run the houses and ensure that families of ill children have a safe, warm and clean place to stay completely free of charge for as long as they need it.

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