My son Neil Desai died suddenly and unexpectedly in his sleep on the 5th September 2008, his 22nd birthday, whilst on holiday with his girlfriend in Spain. His death caused immense shock and sadness for our family and his friends. Neil died of an unidentified cardiac condition, which was eventually classified as Sudden Adult Death Syndrome (“SADS”).
Neil was an incredibly talented individual. He was a world ranked squash player; an outstanding cricketer who had appeared in the Wisden Almanac as one of the top schools’ all-rounders in the UK representing Tiffin School; a first class student of Law at Nottingham University and had gained work experience at a number of ‘Magic Circle’ law firms in the city including Clifford Chance, Linklaters, Slaughter & May and Allen & Overy. He won the Sports Personality of the Year award at the University of Nottingham in 2008.
The day before Neil died, he had just finished his vacation schemes at the three law firms and flew to Spain on the 4th September very early in the morning. This was the first time in 22 years he was not with me on his birthday. I pointed this out to him when he said he was booking a few days holiday away in Spain.
My other son, Samir, was also going on holiday that week so Neil said to me “Mum we will both be back for your birthday next week.” Neil did come back from Spain on my birthday, but not the way I ever dreamed he would.
Neil sent me a text to say that he had arrived safely, and that the weather and hotel were great. I picked up the phone that evening to ring him, but then thought he was on holiday and that tomorrow I would have an excuse to ring him as it was his birthday. Neil was my youngest child and he often pointed out that he was grown up now and I should not worry too much about him. I never got a chance to wish him Happy Birthday the next day. That morning at 5am we got a call from Emma saying Neil had passed away. She was very upset but so brave to ring us herself. I will never forget that phone call from Emma; she said she woke up when she heard a sound and found Neil breathing abnormally. She alerted the in-house doctor and in spite of people trying to resuscitate him they were unable to help him.
My older son was flying to St Lucia that morning. We managed to speak to him before he left, and were all on the flight to Malaga by 8am. In Spain they do not wait for the next of kin before the pathologist does an autopsy. Neil had the highest level of travel insurance but we still had so many problems.
Neil died on Friday and we were told we could not see him till Tuesday. We got to see our son the next day, but only after so many phone calls and the help of my niece whose Spanish friend had contacts with the local judge. It was devastating sitting in this five star hotel with everybody on holiday around us when we were waiting to see Neil. We could not believe that they had already cleaned his room and somebody else had moved in.
We flew back to UK the next day on the Saturday after we saw him, but my son came back on the Wednesday. There is so much paperwork to complete when someone dies abroad and the procedures are so complicated and different from the UK.
Two other pathologists carried out an autopsy in the UK and the conclusion was SADS. Our whole family had various cardiac tests but nothing showed up. My son was such a healthy, happy and positive person who was always smiling. He was just so full of energy and was always the life and soul of any party. He had a knack of talking to anyone, and was always so outgoing and happy. He travelled to so many countries in his gap year and wanted to raise money for the poor and needy. He achieved so much in his short life. Our family will never be the same again and his loss has left a great hole in our lives.
We came to know about the charity CRY after my son’s death. We have found CRY to be a great source of comfort for our family in these dark times. Reading the long list of stories of other parents who have lost children on the CRY website one cannot help but be struck by how sad and unnecessary this loss of life is.
Neil was the recipient of the TASS (Talented Athlete Scholarship Scheme) sports scholarship for a number of years, which provides funding, and prescribes athletes intense training programmers and diets, yet he was not given any health checks before embarking on these activities. Had we known about cardiac risk in the young we would have had Neil checked, however, it may be that the onus should be on the Government to test these young athletes…
In the UK we do not have a cardiac screening policy, and young people are dying unnecessarily – without a test it is practically impossible to tell whether a child has a heart condition; Neil, as noted above, was very healthy and athletic, and there is no history of these types of death in our family. Losing your child is the worst loss. You never think your child will die before you and as a parent you hope to protect your child. I very much hope we will soon implement a nationwide testing policy, especially as we encourage youngsters to train for the 2012 Olympics.
Neil’s family and friends have set up the Neil Desai Foundation to support CRY and other causes dear to Neil.