A mother is fighting to raise £50,000 to take her daughter to the US for treatment in a desperate bid to save her baby daughter’s life.
Lydia Germon, was given just 24 hours to live when she was born in October – and has faced a daily battle to survive ever since.
The seven-month-old from Swansea, Wales, has Dandy-Walker variant – a brain abnormality which has caused her head to swell.
And despite undergoing numerous operations – doctors have said ‘nothing more can be done’.
Lydia Germon, from Swansea, Wales, was given just 24 hours to live when she was born in October – but she has battled to survive every day since. She has Dandy-Walker, which has caused a massive build up of fluid called hydrocephalus in her brain (pictured left with her sister Caitlyn, seven)
Lydia defied the odds and surprised doctors when she was born after being diagnosed with the condition during pregnancy.
Her mother, Bethan, 28, refused to give up on her and declined an abortion at her 20 week scan.
The rare condition has caused a massive build up of fluid called hydrocephalus in her brain.
Now her family hope a treatment in the US to drain some of the fluid from her skull, which is not available in the UK, can give her a new chance at life.
Mrs Germon said: ‘I can’t just sit back and watch my child die and you can’t put a price on human life.
‘At the moment Lydia has a life sentence of only a few months. Even if it proves unsuccessful then I’ll have done everything I can.
‘We’ve been to hell and back since last year. It feels like doors have been slammed in our face at every turn.
‘This fundraising and people’s support all means so much to us as we don’t know any other Dandy-Walker patients in Wales because the abortion rate is so high.
Numerous operations and shunts have been fitted to try and help but so far nothing has worked. Now her family hope a £50,000 pioneering treatment in the US can give her a new chance at life (mother Bethan, 28, left and father David, 28, right)
‘We do get some ignorant comments about our choice but on the whole people have been great.
‘Her condition is not degenerative. She shouldn’t get worse and so if we can treat her now, she should have a chance of a normal life.
‘The NHS in Wales want us to think about palliative care and letting Lydia go but I will never give up while we have options.’
She also praised her other daughter, Caitlyn, seven, who she claims has been ‘amazing’ throughout everything.
Renowned neurosurgeon Benjamin Warf is well known in the state of Boston for his work with children suffering from severe hydrocephalus.
Lydia’s family have contacted renowned neurosurgeon Benjamin Warf, from Boston, an expert in children suffering from severe hydrocephalus
The operation could reduce the fluid in Lydia’s brain giving it a chance to grow and improve Lydia’s quality of life. Mrs Germon said: ‘I can’t just sit back and watch my child die and you can’t put a price on human life’
Both Mrs Germon and her husband David, 28, have contacted Dr Warf and believe he can help.
The operation could reduce the fluid in Lydia’s brain giving it a chance to grow and improve Lydia’s quality of life.
Lydia had been receiving specialist care at the University of Wales hospital in Cardiff but became acutely unwell and transferred to Alder Hey Children’s Hospital in Liverpool last month.
Rachel Burton, Director of Operations for the Children and Women’s clinical board at Cardiff and Vale University Health board said she was unable to comment on individual cases due to patient confidentiality, but described the condition Lydia has as ‘complex’.
‘Dandy-Walker variant is a very complex condition and there are many layers of uncertainty in its overall impact on the patient and the treatment they may receive.
‘This makes it hard to predict with any certainty what the effects will be in a particular individual and their prognosis.
‘This uncertainty can be distressing for any family.
‘The Health Board is committed to do all we can to support Lydia and her family during this difficult time.’
For more information or to donate for baby Lydia’s cause,