It is just over a year ago since we donated a website, hosting and email and a quick spot of training to “The Little Wee Man” in order to help Jackson and his parents (Jim & Debbie) spread the details of Jax’s medical condition which has no diagnosis as yet.
Jackson is taking part in the 100,000 Genome Study, a project whose aim is to create a new genomic medicine service for the NHS – transforming the way people are cared for. Patients may be offered a diagnosis where there wasn’t one before. In time, there is the potential of new and more effective treatments.
The nearest recognised condition with similar characteristics to Jackson’s is a rare condition called Hyperekplexia. but genetic testing has come back negative for this, so the official diagnosis is we have “a none diagnosis”. Jackson’s condition is not recognised by the NHS and are no further tests that can be carried out at present, although his MRI & CT scan will be repeated when he is older.
Debbie and Jim (and not forgetting Jax’s sister Erin) have been selling wristbands to try and raise fund for items that Jax’s needs and to help to cover some of the associated “Life” costs such as travel to hospitals etc.
To this end, we’ve just added SSL certificates to their website and given them a simple store which allows them to sell “The Little Wee Man -#answersforjax” wristbands online to help raise awareness and show support for Jackson
If you can spare a couple of quid to purchase a wristband or maybe make a donation we know it would make a lot of difference to the Finnie Family !
