Last Saturday, I met Jack and Guy along with their parents to talk about Severe Combined Immunodeficiency. Both Jack, aged 7 and Guy, aged 6, suffered from SCID when they were both around four months old.
When Jack and Guy were born, they were, as far as their parents were concerned, healthy new born babies. But the joy of their new arrivals was brought to an abrupt end, when their children became very ill in a very short period of time.
Both children were diagnosed with SCID and were taken to Great Ormond Street Hospital, where they were treated by Professor Bobby Gaspar, who is a leading expert in the disease, and was also present at the meeting.
Guy was flown by helicopter, and Jack rushed to London in an ambulance. Both parents became very emotional as they described the agony of seeing their baby taken into the care of medical staff, not knowing if they would see them alive again.
Jack’s parents told me how they set off in the car to London, only to get stuck in traffic, as they saw the blue lights of a Leicestershire ambulance approach from behind, knowing that Jack was fighting for his life inside, and that there was nothing they could do to help.
Severe Combined Immunodeficiency affects many children across Europe, and a simple screening test at birth could prevent the pain and anguish children and their parents go through.
The test costs around 3 pounds to carry out, and there will be an initial set up cost of 2 Million pounds. This may seem like a large amount of money during the current financial crisis, but it is an investment that will pay for itself, especially when you consider that it costs thousands of pounds per day to look after a sick child in intensive care.
Jack and Guy’s story was difficult to listen to at times, and when Guy told the meeting that he thought he would die, there wasn’t a dry eye in the room.
I am fully behind the campaign to have all new-born children screened for SCID, and will do all I can to make it happen. Because listening to Jack and Guy’s story, and knowing that their suffering could have been prevented, is enough for me to take action.