A couple from Larches are calling for the government to make urgent changes to the way babies are tested for potentially fatal diseases.Advertisement
Anthony Rushe (AJ) was born in December 2013 and sadly passed away in late January from Krabbe’s disease.
Jenna Bannon and Tony Rushe have been campaigning for Jeremy Hunt to introduce more tests to the heel prick test – which can potentially trace many life-threatening illnesses.
More than 27,000 signatures have been added to the 38 Degrees website which has the target of 100,000 signatures to trigger a debate in the House of Commons about the issue.
A statement from the family said: “We would like the number of diseases screened for during the heel prick test to be raised to bring the UK in line with other countries. I am alarmed to find that only 5 (I believe going up to 9) disorders are currently screened for during the new born screening tests in the UK.
“The USA legally screen for 31 disorders in all states during new born screening tests (up to 60 in some states), Australia and New Zealand for 28, European countries screen for up to 29, the UK is seriously lagging behind in this field.
“I would like the government to make a proactive change in new born screening in the NHS so more disorders are screened for in the UK and less families have to go through this heart-breaking, powerless ordeal of watching their child suffer or die. Especially when some of these disorders can be easily tackled with medicine or diet changes if caught early enough.”
AJ was diagnosed with Krabbe’s disease. It is a disorder which causes the loss of hearing, eyesight, use of the nervous system, the ability to swallow and eventually leaves the child unable to breath. Most infants diagnosed with Krabbe’s don’t live beyond their second birthday.
AJ died peacefully at home on Saturday 31 January surrounded by his family.
They have praised the staff at Chorley hospice Derian House for their support throughout AJ’s life.
Sign the petition to add your voice to the call for the NHS to change the way they screen for diseases
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Email your local MP to ask them to raise the issue and sign the petition. The Preston MPs are Mark Hendrick and Ben Wallace. There is an election in May, not being cynical, but they tend to pay more attention when votes are at stake!
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