The family of a Derry baby who died following a rare illness have spoken for the first time about their heartache at losing their beautiful baby son.
Shea Smith died in March, just three months ahead of his third birthday.
His devastated parents Emer and Shaun are still trying to come to terms with their loss but have paid tribute to their baby who they have described as being “beyond brave,”
Shea’s mother Emer learned when she was pregnant that her son’s brain wasn’t developing properly. However it was only months into his short life that doctors discovered he had a combination of two extreme illnesses which they say hits only two people in every million.
Shea suffered from Schizencephaly - a rare developmental disorder. At just over three months old he was also diagnosed with West Syndrome Epilepsy, the most severe form of the disorder which affects one in every 3,000 children.
“Everything seemed to be going ok with Shea but when he was around five months I noticed that he wasn’t really following things with his eyes and he had started to throw his head back,” said Emer.
“At that point he was admitted to Altnagelvin for tests and he was put on steroids to stop the seizures. The seizures stopped then for a while but when they started again he was sent to the Royal Hospital for more tests and they discovered that he had West Syndrome as well as Schizencephaly.”
Still devastated by her loss, Emer said her son never stopped smiling even when he was in pain.
“He was literally the bravest person I’ve ever met. He even smiled through his seizures. Shea was blind from when he was a few months old but he just loved music, and he kept us all going.
“We thought he was doing well just before he died. We’ll never stop missing him. He was our wee star.”
Shea’s aunt Elaine praised her sister Emer and Shea’s dad Shaun for their bravery throughout their son’s illness when they cared for their son 24 hours a day.
“They are a credit to themselves and to Shea. They are so so brave and we’re all so proud of them.”
Emer and Shaun last week made a donation to the Children’s Ward at Altnagelvin where Shea was treated by consultant paediatrician Damian Armstrong.
“Dr. Armstrong was fantastic and we just wanted to do something in Shea’s memory,” says Emer.
“We’re hoping to organise a charity night for him just to keep his memory alive.”
Shea’s aunt added: “Shea has changed every one of us, he’s changed the way we look at life. He was a blessing to us all.”