A Diss couple whose five-month-old baby was born with cleft lip and palate, a notch in his gum and only one nostril, are organising a fundraiser in aid of the charity which helps people with his condition.
Sarah MacPherson, 26, gave birth to Reks on September 14, 2012, after finding out at her 20 week scan that he had cleft lip and palate, the cause of which is unknown.
Despite being offered a termination, something Miss MacPherson described as “awful”, her and her partner Wayne Davies, 27, went ahead with the birth, and are now raising money for the Cleft Lip and Palate Association (CLAPA).
Miss MacPherson, said: “The nurse said there is something wrong with your baby and there was a long pause. She said he had a cleft lip but she couldn’t see his stomach on the scan or his heart properly.
“It was a bit of a shock and we were sent home not knowing if anything else was wrong.
“We had to have two more scans after that which you don’t normally have. It took about a month until we knew everything was OK but they did get us back to the hospital two days later for the first scan and the doctor answered all our questions.”
Reks had his first operation on January 2, which repaired his lip and nose and a little bit of his palate. He will have a second operation in April to fully repair his palate and providing that goes well, his next operation will be at the age of seven.
“We were very anxious about it but you find some inner strength to get through,” said Miss MacPherson. “I think we kind of grieved for the baby that we thought we were going to have, because everyone pictures having a perfect baby.
“But when he was born we fell in love with his cleft and his big smile. People said to me you will miss his cleft and I thought really, but we do.
“Our family and friends have been amazing, really supportive and that has really got us through some difficult times.”
A cleft can sometimes lead to feeding, speech and hearing problems, ear infections, dental decay, jaw development problems and psychosocial issues.
Miss MacPherson said Reks seems to be progressing well, and described him as a very “happy chappy.”
The fundraiser will be held at Diss Cue Club on March 30 at 7.30pm. Admission is free but there will be a disco, raffle, leg waxing and other entertainment, and Miss MacPherson hopes people will dig deep and fill the collection buckets.
“I would have never known about CLAPA or have met all these people who are going through the same thing if we didn’t have Reks,” she said. “We’ve become part of a family and the cleft team at Addenbrooke’s have been fantastic.
“We were both quite worried about going out and how people would respond, but now we are proud of it and love to show him off and not hide away.”