The living room of Vicky Holliday and her partner Keith Newell’s home, in a quiet cul-de-sac in High Wycombe, has all the telltale signs of new parenthood: multicoloured baby mat, cuddly toys, photos of the proud parents with their newborn baby. But, as they breezily set about feeding 10-month-old Jessica – a complicated procedure involving first testing her stomach contents to ensure the gastric tube through her nose is in the right place – the couple describe just how much every moment with their daughter is another to cherish.
In June, Holliday and Newell were told that Jessica has Leigh’s syndrome, an inherited neurological disorder that was already causing lesions in her brain. She will never walk, talk, or crawl, the doctors said.
As they struggled to absorb what they were being told, Newell asked how it might affect her in later years. There was a silence. The disease was “severely life-limiting”, the doctors told them. There is no cure, so Jessica will die in infanthood, potentially quite quickly if she develops breathing problems. “We don’t know how long we’ll have with her,” said Holliday, 38, a management consultant.
For now, the couple’s focus is on alleviating their daughter’s symptoms and making her short life as enjoyable as possible. But they are hoping that draft regulations allowing doctors to create “three-person embryos” get the go-ahead this week, so that they will not have to take the chance that a second baby would be affected by the same debilitating condition as Jessica.
Read full, original article: Parents of disabled child appeal to MPs to allow ‘three-person embryos’
