Lydia Germon was born in October 2015 with Dandy-Walker Syndrome, aggravated by hydrocephalus, and doctors said she would not live 24 hours. But thanks to the efforts of the mother and the medicines, the child is still alive and the mother is desperately fighting for her daughter to live even longer.
Dandy-Walker syndrome - an anomaly in the development of the cerebellum and the surrounding cerebrospinal fluid spaces; a genetically determined disease with a frequency of occurrence of 1: 25,000, mainly in females. Dandy-Walker syndrome is often combined with underdevelopment of the corpus callosum, abnormalities in the development of the heart, facial skull, and fingers.
Now the girl's mother, who lives in Wales (UK), is collecting money to travel with the child to Boston (USA), where they can receive medical assistance by removing excess fluid from the skull. In the UK, Lydia has already gone through several operations, but then the doctors threw up their hands and said that they could not do anything beyond that. But Boston has operations that are not available in the UK.
Lydia has an older sister
- I just can't sit still and watch my daughter's suffering and how she is slowly dying, - says 28-year-old Bethan Jermon, - Now she was given a term of life for a few more months, and even if the new operation is unsuccessful, I must do everything I can. for this. It is as if we have been in and out of hell alternately for the past seven months.
For travel and surgery, you need to collect 50 thousand pounds. According to the girl's mother, there are no more children with this diagnosis in Wales, as they are usually disposed of as soon as doctors report fetal abnormalities. But Bethan could not decide on an abortion.
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- Yes, unflattering comments about our decision are often written to us, but there are a lot of those who support our choice. Her condition is not degenerative and therefore she should have a chance for a normal life. In Wales, we are told to agree to palliative care and to let Lydia leave when she is due. But I will never give up if we have other options.
Palliative care (from the French palliatif - palliative) is a system of measures aimed at maintaining the quality of life of patients with incurable, life-threatening and severe diseases, at the highest possible level for a given patient's condition, comfortable for a person.
In Boston, they can really be helped, there is a renowned neurosurgeon Benjamin Warf who works with severe forms of hydrocephalus. The Jermons have already contacted him and are confident that he will help them. Smart surgery can remove fluid from the brain and greatly improve the condition of the child.