Boys with incurable disorder, Adrenoleukodystrophy, have only a matter of a few years to live.
Last year, Alex Hunt, from East Dulwich, lost his fight against Adrenoleukodystrophy (ALD). ALD, a rare neurological disorder that deteriorates the myelin sheath, the insulating material surrounding the nerves, leaves healthy young boys in a semi-vegetative state within months.
Many young boys start to have behavioural problems at school, difficulty speaking, hearing and coordinating, and eventually suffer from paralysis and seizures. Born in 1993, Alex was a typically active healthy young boy excelling at school. In 2001, he was diagnosed with ALD and within a short space of time became fully dependent. Doctors gave him only a few years to live. But, Alex had survived for more than a decade, being one of the few lucky ones to have done so.
ALD Life, a small independent charity based in south London, help provide support to patients and families affected by this cruel and devastating disorder across the UK. Set up by Alex's mother, Sara, the charity has started a medical research appeal to fund research into finding a cure for ALD.
Last year, the charity gave over £10,000 in funding to research institutions to carry out research into ALD.
She said, "At present, we receive no government funding and funds to support research comes straight from charities such as ourselves.
Unfortunately, as the only patient support group for the disorder in the UK, there isn't enough funding available to support research into ALD.
That's why we've started an appeal. To be able to help more research projects will hopefully help us save precious time before a cure is hopefully found."
Donate now by visiting https://www.justgiving.com/ALD-Life-Medical-Research-Appeal or texting CURE86 £2 to 70070.
Last year, Alex Hunt, from East Dulwich, lost his fight against Adrenoleukodystrophy (ALD). ALD, a rare neurological disorder that deteriorates the myelin sheath, the insulating material surrounding the nerves, leaves healthy young boys in a semi-vegetative state within months.
Many young boys start to have behavioural problems at school, difficulty speaking, hearing and coordinating, and eventually suffer from paralysis and seizures. Born in 1993, Alex was a typically active healthy young boy excelling at school. In 2001, he was diagnosed with ALD and within a short space of time became fully dependent. Doctors gave him only a few years to live. But, Alex had survived for more than a decade, being one of the few lucky ones to have done so.
ALD Life, a small independent charity based in south London, help provide support to patients and families affected by this cruel and devastating disorder across the UK. Set up by Alex's mother, Sara, the charity has started a medical research appeal to fund research into finding a cure for ALD.
Last year, the charity gave over £10,000 in funding to research institutions to carry out research into ALD.
She said, "At present, we receive no government funding and funds to support research comes straight from charities such as ourselves.
Unfortunately, as the only patient support group for the disorder in the UK, there isn't enough funding available to support research into ALD.
That's why we've started an appeal. To be able to help more research projects will hopefully help us save precious time before a cure is hopefully found."
Donate now by visiting https://www.justgiving.com/ALD-Life-Medical-Research-Appeal or texting CURE86 £2 to 70070.
