Chris and Martin are raising funds for AlexTLC. Established in 2004, Alex TLC is the only charity in the UK that provides invaluable support and information for anyone with a leukodystrophy, their families, and carers.

Leukodystrophies are rare genetic disorders that mainly affect the white matter of the central nervous system (i.e. the brain or spinal cord). They affect people of all ages and backgrounds, most notably children.

Chris’s Wife and Eldest Son, Martin’s Sister-in-Law and Nephew were diagnosed as having the rare genetic condition called ALD (Adrenoleukodystrophy)

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Martin is doing the Aberdeen Kilt Walk (The Mighty Big Stride) on Sunday 4th June 2023 https://www.thekiltwalk.co.uk/events/aberdeen

Chris is doing the Stonehaven MSBH Cycling Sportive (Undo) on Saturday 17th June 2023. https://www.midsummerbeerhappening.co.uk/sportive

Our family’s story with ALD begins in 1992 when Chris’s late father in law started showing symptoms of an illness and he was diagnosed as having Addisons disease, then in early 2016 Chris’s wife received a call from her cousin with some devastating news that he had been diagnosed with a condition called ALD (Adrenoleukodystrophy) and advising her to go and get a test to see if she had the ALD X-Linked gene, in late 2016 it was confirmed Chris’s wife had the X-Linked ALD gene. Chris and his Wife had to decide then if they were to get there only son at the time tested, after much discussions they initial decide not to get him tested, but after they found out Chris’s wife was pregnant with their 2nd child, they decide the time was right to get their soon to be eldest son tested and in late 2018 they got the news that their eldest son had ALD X-Linked gene, when their youngest son was born he was tested for ALD and was found not to have the ALD X-Linked gene (this test is not part of the new born screening program in the UK).

While on our journey to understand ALD and how it would affect us as a family, we discovered that the symptoms Chris’s late father-in-Law had was consistent with ALD, therefore he was probably misdiagnosed in 1992. Adrenal Insufficiency (Addison’s Disease) is closely linked to ALD.

ALD rarely affects the females, they usually have a full and productive life, but they are the carriers of the faulty x-linked gene but it can be devastating in males if they develop the condition in their teens or before. Usually by the time they start showing symptoms it is usually too late for them and their life expectancy is short. Sometimes only a few years and they usually require 24 Hours care.

We are currently fortunate that Chris’s eldest son is not showing any signs of ALD progressing at this stage. The family history of ALD points to him developing late onset ALD, with him displaying symptoms and his health deteriorating in later life, we are fortunate that we know about the condition and the medical profession can monitor his condition and notice any changes before he develops symptoms. By monitoring him and noticing changes in him before symptoms start to show, we have a chance to maybe take steps to try and stop the condition developing further but that also comes with its own risks. If has condition does change and starts to progress, he along with us his immediate family will need a lot of support from medical profession and our wider support network.