A DESPERATE dad has shared an emotional insight into a parent’s journey by describing what it is like to live with a child whose future remains uncertain.

Bethan and hubby David Germon, from Swansea, have spoken of their heartbreak after the NHS told them just weeks ago that they had reached the limits of the treatment currently available for their beautiful baby girl.

Baby Lydia was born with Dandy-Walker, which affects just one in 25,000 births worldwide and causes fluid to build up around the brain.

The little girl, who was once given just 24 hours to live on New Year’s Eve, has continued to defy expectations—and even returned home with her parents in March.

But despite exceeding early expectations and overcoming meningitis, doctors in the UK have warned her parents that her condition remains extremely fragile.

Dad David, who has set up a page for his daughter, wrote:

“On New Year’s Day we were given 24 hours and by God’s amazing grace she pulled through and has been home with us since March.

“We were told there is no more the NHS can currently offer her and that her condition could change at any time.”

But despite the NHS reaching the limits of available treatment, the parents say there is still hope.

They have shared that they found a surgeon who believes he may be able to treat the condition that has affected Lydia since birth.

They contacted US surgeon Benjamin Warf, who is based in Boston, and he believes he may be able to help their little girl.

David wrote:

“We have found a surgeon in Boston who believes he can help our beautiful baby girl. This is SERIOUSLY EXPENSIVE.

“We are not worried about the overall cost as we are happy to sell our house; however, time is limited to sell the house and raise the funds.

“So we are setting this page up to raise as much support as possible so we can fly to Boston as soon as we can.”

With the treatment expected to cost at least £50,000, the expense has led the couple to set up a JustGiving page.

Little Lydia’s rare condition was first identified during her 20-week scan, but her devoted parents chose to continue the pregnancy.

Lydia, who has undergone 10 neurosurgical operations, has spent most of her life at the University Hospital of Wales in Cardiff as well as Swansea’s Singleton Hospital.

Despite everything she has faced, mum Bethan says she wants to do everything possible to give her daughter every opportunity.

Bethan said: “We were told that our baby had Dandy-Walker variant, which is a rare condition affecting the brain.

“It has caused a significant build-up of fluid in Lydia’s brain called hydrocephalus, and she has had countless surgeries and shunts fitted to try and help, but so far nothing has worked.

“Her condition is not degenerative. It shouldn’t get worse and so if we can treat her now, she could have the opportunity for a normal life.”

Bethan, who says she has been through “so much,” added: “At the moment Lydia’s outlook is measured in months.

“Even if Boston proves unsuccessful, I’ll know I did everything I possibly could.

“I can’t just stand by and do nothing, and you can’t put a price on giving a child every possible chance.”

Rachel Burton, Director of Operations for the Children and Women’s Clinical Board at Cardiff and Vale University Health Board, said: “Dandy-Walker variant is a very complex condition and there are many layers of uncertainty regarding its overall impact on the patient and the treatment they may receive.

“This makes it difficult to predict with certainty how it will affect an individual child or what the long-term outlook may be.

“This uncertainty can be incredibly distressing for any family.

“The Health Board is committed to doing all we can to support Lydia and her family during this challenging time.”

Source: Express.co.uk