May charity news – ALD Life

“They help us to have fun as a family”

Karen Harrison, 46, from Hertfordshire, explains how ALD Life helped to end her isolation

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When Karen Harrison’s son, Alexander, was six years old she noticed a change in his behaviour. “He developed a squint and had difficulty finding things. He would be unable to find the way to his bedroom – it was very odd,” remembers Karen.

After several visits to the GP, in September 2002 Karen took Alexander to see a private consultant, who immediately knew something was wrong. “He was sent for an EEG – a test to measure his brainwaves – which showed abnormal activity that wasn’t epilepsy,” says Karen.

Alexander was referred to a neurologist who, after asking him to write and walk and checking his reflexes, diagnosed childhood onset cerebral adrenoleukodystrophy (ALD), a genetic disorder that destroys the myelin sheath that protects the nerves in the brain, causing a person’s physical and mental abilities to deteriorate.

“The neurologist explained that Alexander’s symptoms were too advanced for any treatment. They told us to just take him home and love him, as there was nothing else they could do.”

An MRI and blood test confirmed Alexander’s twin brother, Cameron, now 19, also had the condition. “It was devastating. Cameron had no symptoms at this point but it was heartbreaking to know his health would also deteriorate. I was also 40 weeks pregnant with my third son, Glen, who I was told had a 50/50 chance of having ALD.”

Within a week, Cameron had a consultation at Bristol Children’s Hospital, who agreed to do a bone marrow transplant to try to halt the progression of the demyelination of the brain, which leads to loss of function.

“Cameron had two transplants, both using stem cells donated by his dad Jonathan, and the second was successful,” says Karen. “In the middle of that, I gave birth to Glen and was so relieved to find out he didn’t have ALD.”

In 2004, 18 months after he was diagnosed, Alexander sadly passed away. “Losing our son was devastating. Cameron was starting to lose various functions and Glen was only 18 months old, so we didn’t really get time to grieve.”

Cameron is now severely disabled. “He’s in a wheelchair, he has lost his sight, speech and some of his hearing, and is fed through a device through a hole in his stomach. He also suffers seizures and has Addison’s disease, a disorder of the adrenal glands. However, he’s very alert and knows who we are, and he is still full of laughter.”

Luckily, Karen and her family have been able to access support from the charity ALD Life, where she now works as the Endocrine Awareness Project Manager. “When we came back from Bristol, I contacted The British Trust for the Myelin Project and asked if they knew anyone with any experience of ALD. Half an hour later I received a call from Sara Hunt. We struck up a friendship immediately and, in 2004, when she set up the charity ALD Life, I was keen to get involved.”

In 2007, Karen and her family attended the first ever ALD Life Community Weekend. “It was very exciting – there was so much for the whole family to enjoy,” says Karen.

“Since then, we’ve attended each of the annual weekend breaks and have made some lifelong friends. It’s amazing to be together having fun as families, which is something we don’t get to do very often. Having the opportunity to have a nice time, build precious memories and enjoy a bit of time out is so incredibly special.”

ALD Life – THE FACTS

  • ALD is a serious progressive genetic disorder that affects the adrenal glands, spinal cord and the white matter of the nervous system. It affects more males than females.
  • ALD Life was started by CEO Sara Hunt in 2004. Her son Alex was diagnosed in 2001 and died in 2012, aged 19. It offers support for families as well providing research funding and information for medical professionals.
  • The annual ALD Life Community Weekend (27-29 May 2016) provides much-needed respite for families and a chance to find out about the latest research. Visit aldlife.org

BIG GIVE UPDATE

The £8,118 raised by ALD Life in The Candis Big Give will help fund a community weekend, which will bring together individuals affected by ALD and adrenomyeloneuropathy (AMN), the adult form of it, along with medical professionals
and researchers.

Photo: Paul Cahill

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