Tom Evans and Kate James with baby Thomas on British breakfast show This Morning. Photo / Rex
Tom Evans and Kate James with baby Thomas on British breakfast show This Morning. Photo / Rex
The parents of Alfie Evans have proudly shown off their new baby boy who was born four months after their brain-damaged son died from a rare genetic disorder.
Tom Evans and Kate James appeared on UK breakfast show This Morning to reveal their son Thomas for the first time sincehe was born early last month.
The pair also revealed that they have finally been told of the condition which killed Alfie - a degenerative brain disease called GABA-transaminase deficiency, according to the Daily Mail.
Kate James pictured with Alfie, her first-born son who died after a long battle with a genetic illness.
Doctors told the parents that they had a one in four chance of passing on the disorder - of which there have only been 10 cases worldwide - to future children.
Following Thomas' birth, the parents faced an "agonising" four-day wait to see if their new son had the same condition, before tests came back negative.
Speaking to This Morning co-hosts Phillip Schofield and Holly Willoughby, Kate admitted that she was scared about "resenting" the newborn baby before his birth.
"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.
"We found out after Alfie passed about the condition being passed on through us. And then we were told we have a one in four chance of it happening in more babies.
Tom Evans and Kate James with baby Thomas on British breakfast show This Morning. Photo / Rex
"Around June the midwife phone 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 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.
"He frowns and stretches like Alfie, he is just a double. When I had him, I wondered 'what if he does resemble Alfie', how will I feel.
"It's nice to be able to say his name and feel positive."
Tom, speaking with tears in his eyes, 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.
"We're happy for what we had, and what we have still got because we have two amazing children and we will always have them."
The case of gained widespread media attention after his parents fought to take Alfie to Rome for emergency treatment.
But the 23-month-old baby died in April after a court ruled for his life support to be switched off.
Both James and Evans carry a rare gene which sparked Alfie's illness, leading to fears Thomas could inherit the same condition.
But it the four-week-old boy passed a series of tests in hospital, leaving his parents "very relieved".
Thomas Evans' post to his young son Alfie who was at the centre of a prolonged battle between his parents and British health authorities. Photo / Facebook
Evans wrote a touching post on Facebook dedicated to his late son last week.
On Thursday he wrote: "4 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."
The couple, from Liverpool, launched a legal bid to keep their dying son alive doctors applied to turn off his life support.
Evans even flew to Rome to visit Pope Francis after doctors in Italy offered to treat the toddler.
GABA-transaminase deficiency
GABA-transaminase deficiency is a brain disease that begins in infancy.
Symptoms of the disorder include seizures, uncontrolled limb movements, exaggerated reflexes, weak muscle tone, and excessive sleepiness.
Children living with the condition do not usually live past two years of age.
Only 10 cases have ever been documented, with five dying within the first two years and five young children still living with the condition, but still living with severe neurodevelopmental impairment.
The disorder is genetic, and is passed down to offspring 25 per cent of the time when both parents carry the mutated gene.
