Extra screening for people with a cancer predisposition... Li fraumeni syndrome

My son WILLIAM who is now fifteen months old was diagnosed with a rare brain cancer at just 7 months old . He was given a 25% chance of survival. He has however defied the odds and is now in remission. WILL had genetic testing to see if there was a reason as to why he had his cancer. And there was. Li fraumeni syndrome was the diagnosis. It's very rare. It is basically a cancer predisposition that gives you a significant chance of developing cancers anywhere in the body. Not just once but possibly multiple times. At present there is no extra screening available for people with this illness. This is heartbreaking as a parent especially when other countries have screening programmes in place to catch these cancers early. Will is one of five children and surely things need to be changed so WILL can be part of his family for a long long time. It's bad enough having this disorder but for no screening to be in place is absolutely awful. please help. Many thanks WILLS mum Jenny
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