Eastbourne woman sets up petition to share awareness of son’s terminal condition

Rosie Aldridge has an 11-year-old son called Alfie who was diagnosed with adrenoleukodystrophy, also known as ALD, when he was eight.

Due to the age Alfie was diagnosed, nothing can be done to save him. But she wants to help other families by launching a petition to make sure babies are screened for the condition at birth.

Rosie said, “He lost everything within a few months of diagnosis. He can no longer walk, talk or eat and is completely dependent on us now.

“This will take his life. Do you know how horrendous it is to know that one day you will bury your child?

“He wanted to be a racing driver. I remember him saying when he’s older he’s going to drive me to the shops to do my shopping. If anyone was to drive a car it was Alfie, something he will never get to do.

“This is our reality, we need to get this out there. This wouldn’t have happened if he had been screened at birth.”

Rosie is now calling for babies to be screened for ALD at birth.

According to NHS England, ALD is a rare genetic condition that affects one in 20,000 males.

If not diagnosed from birth healthy boys can lose all function and die. ALD also causes Addison’s disease which is easily treated with medication.

However, if you don’t know you have Addison’s disease or ALD they can both be fatal.

NHS England says it takes many months, even years to be diagnosed with ALD, but by then it is too late for treatment and these boys can end up in a vegetative state with death often occurring within two to four years. Boys who are known to have ALD will be put on a program of monitoring and treatment to save their lives. Knowing you have ALD from birth is essential for successful treatment.

If the petition gets to 10,000 signatures the government will respond and if it gets to 100,000 signatures it will be considered for debate in Parliament.

Anyone wanting to sign the petition can find it here: https://petition.parliament.uk/petitions/563123

For more information about ALD, go to: https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/adrenoleukodystrophy