text: As he cuddles his beautiful baby grandson, David Suchet looks every inch the proud grandfather. But behind the smiles, he is battling hard to help the little boy face the future with an incurable genetic disease. Suchet, best known as the star of TV series Poirot, is fighting for better treatment for those with rare diseases and has criticised ‘disorganisation’ in the NHS for slowing down the process. His grandson Todd, who is about to celebrate his first birthday, has the rare condition Tuberous Sclerosis Complex. So close: David Suchet with his grandson Todd, who has the rare genetic illness Tuberous Sclerosis Complex . Those with the disease can live a full life but may develop tumours in organs such as the brain and heart and suffer from epilepsy and learning or behavioural difficulties. Suchet, 68, revealed his grandchild was diagnosed with the condition shortly after birth. He said ‘mismanagement in the admin side’ of the NHS means he is not receiving treatment that could help him. Todd is the son of Suchet’s son Robert, a 33-year-old fitness coach. In February MPs raised concerns that slow NHS decision making was blocking patients with incurable diseases from accessing vital drugs. But now Suchet has taken up the battle to ensure his grandson can receive treatment, and is encouraging Twitter users to voice their support with the hashtag #Fight4Treatment. He explained: ‘The condition was discovered when he was just a few weeks old when he started having fits. He had an MRI and was found to have TSC. Some people don’t discover it until later on in life and it can manifest itself in various different phases.’ Speaking about medication that could help Todd, Suchet added: ‘The drugs are available but we can’t get them. ‘There are many reasons why we don’t have access to them but there seems to be such disorganisation and mismanagement in the admin side that it’s all gone pear-shaped and people are suffering.’ The actor has become involved in fundraising for the Tuberous Sclerosis Association charity and narrated a video for its campaign. He explained: ‘#Fight4Treatment is fighting to get drugs for rare diseases and non-rare diseases available from the NHS, to give to sufferers who would benefit. They’re so expensive, it’s almost immoral.’ Suchet, 68, left, and as Poirot, right, said ‘mismanagement in the admin side’ of the NHS means his grandson is not receiving treatment that could help him . In the video he urges people to contact their local MPs to raise the issue with the Health Secretary. He says the family try to be optimistic about his grandson’s prognosis, adding: ‘It’s incurable, but we remain hopeful that we will find something to manage it for him.’ In 2013 it was announced that after over 20 years of playing the Belgian detective, Suchet had decided to say goodbye to Hercule Poirot. He first took the role in 1989, but said the character would not be reprised as every Agatha Christie book about him had been filmed. However Suchet, who is a devout Christian, will be returning to television screens tomorrow to present a documentary about St Peter. In The Footsteps Of St Peter will be aired on BBC1 on Good Friday.
target: David Suchet is seeking better treatment for those with genetic diseases .
  68-year-old's grandson has rare condition Tuberous Sclerosis Complex .
  Suchet claims ‘mismanagement’ in the NHS means Todd is not receiving treatment that could help .