Sonia Jandhyala tells Jaine Blackman of the despair and love she felt on the day her ‘doubly unlucky’ son was born

People say ‘you wouldn’t have him any other way’ but if I could wave a magic wand for him to be completely normal I’d do it in a heartbeat,” says Sonia Jandhyala about her son Luca.

The “cheeky” seven-year-old was born with two syndromes affecting both his appearance and development but thanks to his parents’ devotion and support from Frank Wise School he is making good progress.

Now Sonia and doctor husband Ravi are raising funds for the special needs school in Banbury.

Talking about his birth, Sonia, of Great Bourton, says: “The bottom fell out of our world.

“It is difficult to describe the feeling of complete devastation that is felt by a parent on receiving such a blow about your newborn child.

“We adored him from the moment we saw him, the most upsetting thing was the fact that we were being told that he was going to have learning difficulties, and had no idea what the future would hold for him.

“One thing that was absolutely certain for us was that we were not going to be defeated by any of it and whatever was thrown at us we would face.

“I had wanted to be a mum for as long as I could remember and I was not going to let anything spoil that for Luca and I.”

Luca was born with Apert Syndrome and Sturge Weber Syndrome, neither of which are related to each other.

“He was just doubly unlucky to have both,” says Sonia. “It came as a huge shock to Ravi and I that he had so many different problems which had not shown up on scans.”

Apert Syndrome is a cranio facial condition which means that during pregnancy, one or more of the sutures in the skull fuse prematurely. The skull doesn’t grow in the normal way and can lead to pressure on the brain; and the fingers and toes are fused together during development.

“Luca’s hands were like little mittens when he was born,” says Sonia an aesthetic nurse who met Ravi when they were both working at Chelsea and Westminster Hospital.

Oxford Mail:

Sturge Weber syndrome is characterised by a port wine stain to the face, which extends to the brain and can cause seizures.

“So when Luca first arrived, Ravi and I knew that he had a long road ahead in terms of surgery for him. We also knew that there was a degree of uncertainty also. Some children with these syndromes suffer from severe learning difficulties and developmental delay whilst others get A-Levels and go on to further education. The fact that Luca has the two syndromes most definitely did not count in his favour.”

Luca has come a long way since his birth, having numerous operations and procedures.

Because of his conditions, Luca still has to put up with stares from strangers but Sonia says since they moved to Oxfordshire things have improved.

“In the early days in Wimbledon before he had his fingers separated it was worse. The staring was horrific; it was terribly upsetting,” says Sonia She recounts with pride a more recent incident when her daughter Sofia, then aged four, squared up to a boy of about eight who had been staring at Luca and told him to stop. “She told the boy ‘He was born that way, he’s my brother and I love him’,” says Sonia.

Luca is her eldest child; she went on to have Sofia, now five, and Theo, three, and her fourth child is due next month.

The couple had extra testing with each pregnancy but as the conditions weren’t hereditary they went ahead with expanding their family thinking they had been so “damned unlucky” the first time that things would be all right. And they were.

Having a brother with disabilities has given her other children “something unique”.

“They have an empathy and are very wise for their years,” she says.

The future is unclear for Luca – children with the two conditions differ in abilities and Sonia and Ravi don’t know of a child who has both of them – but it’s hoped he will gain some sort of independent living as an adult. “He has a fantastic personality and he’s very cheeky,” says Sonia.

“He struggles with his speech, which he finds frustrating, but he understands everything and is very loving and happy.”

The family is clearly close and although Sonia may wish Luca had been born “normal”, her deep love for him shines through.

“It’s been a rollercoaster and I’ve have had some very dark days,” says Sonia. “But we like to embrace a positive side and things could have been a lot worse.”

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