The Daily Mail is reporting on Thomas Evans and Kate James, the parents of Alfie Evans, who appeared on the UK’s This Morning show this week with their new son, Thomas.
The child was born just four months after Alfie died of a rare degenerative brain disease known as GABA-transaminase deficiency. Symptoms of the disease include seizures, uncontrolled limb movements and weak muscle tone. Children born with the disease, which is genetic, rarely live past two years of age.
Alfie died after UK courts ruled against allowing the child to be transported to Bambino Gesu Hospital in Rome where doctors were willing to continue treating him. Instead, the hospital was given permission to remove the child’s life support and he died shortly thereafter.
Thomas and Kate spoke about the anxiety they experienced after learning that they both carried the faulty gene responsible for the devastating disease.
“We found out after Alfie passed about the condition being passed on through us,” Kate told This Morning co-hosts Phillip Schofield and Holly Willoughby. “And then we were told we have a one in four chance of it happening in more babies. Around June the midwife phone[d] me and said I had to come in. We went in and they explained they found two faulty genes, one from Tom and one in me. I knew there was a chance Tom [their newborn son] could have the same condition but it wasn’t until I was induced that I began to really worry about it and became convinced he had it.”
They had to wait four “agonizing” days for test results, which came back negative.
Kate also spoke candidly about the mixed emotions she had about welcoming another baby into the world so soon after losing Alfie.
“At first it wasn’t so joyful, we were scared,” she said. “When he came along it was mixed emotions. It was bittersweet. It sounds bad now, but I was scared I would resent the baby. But he’s amazing, he looks just like Alfie. He frowns and stretches like Alfie . . . It’s nice to be able to say his name and feel positive.”
Thomas had tears in his eyes when he added, “Sometimes you feel Alfie is in him. You’ll say ‘Alfie’ and Tom will smile. We will always have two children, no matter what.”
Earlier this week, he penned a touching tribute to his late son on Facebook.
“Four months today you gained your wings buddie. The pain and heartache gets worse everyday. I love you so so much and miss you the world. Until we meet again buddie I love you forever.”
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