In the Face of Adversity: A Mother’s Journey to Obtain Life-Saving Treatment for Her Child

imageA determined mother is fighting to raise £50,000 to take her daughter to the United States for medical treatment in a desperate attempt to save her baby girl’s life.

Lydia Germon was given just 24 hours to live when she was born in October, and she has been battling for survival ever since. The seven-month-old from Swansea, Wales, is diagnosed with Dandy-Walker variant, a brain abnormality that has led to the swelling of her head.

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Despite undergoing numerous surgeries, doctors have expressed that there’s nothing more they can do for her.

Lydia Germon, hailing from Swansea, Wales, was given a dire 24-hour prognosis at her birth in October, but she has defied the odds by surviving each day since. Her condition, Dandy-Walker variant, has resulted in a significant buildup of fluid known as hydrocephalus in her brain (pictured here with her sister Caitlyn, seven).

Lydia defied expectations and surprised medical professionals when she was born after being diagnosed with the condition during pregnancy. Her mother, Bethan, age 28, refused to give up on her and declined the option of abortion at her 20-week scan.

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This rare condition has caused a significant accumulation of fluid in her brain, known as hydrocephalus. Now, her family is hoping that a treatment available in the US, which can drain some of the fluid from her skull, and isn’t accessible in the UK, can offer her a new lease on life.

Mrs. Germon expressed, “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 the treatment 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.”

She further mentioned that they’ve encountered some unhelpful comments about their choices, but on the whole, people have been very supportive. Lydia’s condition is not degenerative, so if they can treat her now, she should have a chance at a normal life.

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The NHS in Wales has recommended palliative care for Lydia and letting her go, but Mrs. Germon is determined to keep exploring all available options.

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Lydia’s family has reached out to the renowned neurosurgeon Dr. Benjamin Warf, an expert in child hydrocephalus cases based in Boston. The surgery he offers could reduce the fluid in Lydia’s brain, giving it a chance to grow and improving her quality of life.

Both Mrs. Germon and her husband David, 28, are hopeful that Dr. Warf can make a difference in Lydia’s condition.

Lydia had been receiving specialized care at the University of Wales Hospital in Cardiff but became acutely unwell and was transferred to Alder Hey Children’s Hospital in Liverpool last month.

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Rachel Burton, Director of Operations for the Children and Women’s Clinical Board at Cardiff and Vale University Health Board, explained that it is challenging to predict the effects and prognosis of Dandy-Walker variant due to its complexity, which can be distressing for families. However, the Health Board is committed to supporting Lydia and her family during this difficult time.

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