Overcoming all odds: Mother searches for life-sustaining treatment for her child.pink

Lydia Germon, a seven-month-old from Swansea, Wales, has been battling for survival since her birth in October due to a rare brain condition called Dandy-Walker variant. This condition has led to hydrocephalus, causing a significant accumulation of fluid in her brain. Despite numerous surgeries, doctors in the UK have reached the limit of available treatments, prompting Lydia’s determined mother, Bethan Germon, to seek alternatives abroad.


Bethan Germon, 28, declined the option of abortion when Lydia’s condition was diagnosed during pregnancy. She has since been relentless in her efforts to find a solution for her daughter. Lydia’s prognosis has been dire, with doctors initially giving her just 24 hours to live, but she has defied these expectations, continuing to fight each day.

The family has now turned their hopes to a treatment available in the United States, which is not accessible in the UK. They have consulted with Dr. Benjamin Warf, a renowned neurosurgeon based in Boston, who specializes in treating child hydrocephalus. The surgery he offers could potentially drain the excess fluid from Lydia’s brain, allowing it to grow and possibly giving her a chance at a normal life.


The NHS in Wales has recommended palliative care for Lydia, but Bethan is determined to explore every possible option to extend and improve her daughter’s life. The Germon family is working to raise £50,000 to cover the costs of the treatment and travel to the US.

Bethan’s resolve is fueled by the belief that Lydia’s condition, while serious, is not degenerative, meaning that effective treatment now could vastly improve her quality of life. Despite encountering some negative comments about their decisions, the family has received overwhelming support from the community.

Lydia has been receiving specialized care at Alder Hey Children’s Hospital in Liverpool after becoming acutely unwell. Rachel Burton, Director of Operations for the Children and Women’s Clinical Board at Cardiff and Vale University Health Board, acknowledged the complex and distressing nature of Lydia’s condition and reaffirmed the board’s commitment to supporting the Germon family during this challenging time.


The family’s fundraising efforts continue as they hold onto hope that the treatment in the US will provide Lydia with the chance she needs to thrive.

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