Support for baby Martin and family
Donation protected
Martin was diagnosed with Krabbe's disease in August 2017. This was devastating news. It is a terminal illness that means Martin will progressively loose the ability to see, hear, feel, eat and smile. His life expectancy is less than two years.
As a family we have been moved by the incredible support we have had from our friends, family and colleagues since Martin's diagnosis. Several people have suggested they would like to raise or donate money for us. We have initially felt uncomfortable with this but on reflection there are a few things that could improve Martin's quality of life. Our future (financially as well as in every other way) is uncertain and daunting.
Any money raised will be put towards; spending as much time together as a family as possible, creating happy memories and purchasing any equipment that could contribute to a better quality of life for Martin.
Krabbe's disease is a Leukodystrophy which can be stopped in its tracks by major surgery if it is diagnosed before symptoms present. This means it is too late for Martin to receive treatment. Newborn babies could be screened for Krabbe's disease as part of their heel prick test. If you would like to support this screening, there is a petition underway and I have included the link:
http://you.38degrees.org.uk/petitions/save-babies-through-screening
As a family we have been moved by the incredible support we have had from our friends, family and colleagues since Martin's diagnosis. Several people have suggested they would like to raise or donate money for us. We have initially felt uncomfortable with this but on reflection there are a few things that could improve Martin's quality of life. Our future (financially as well as in every other way) is uncertain and daunting.
Any money raised will be put towards; spending as much time together as a family as possible, creating happy memories and purchasing any equipment that could contribute to a better quality of life for Martin.
Krabbe's disease is a Leukodystrophy which can be stopped in its tracks by major surgery if it is diagnosed before symptoms present. This means it is too late for Martin to receive treatment. Newborn babies could be screened for Krabbe's disease as part of their heel prick test. If you would like to support this screening, there is a petition underway and I have included the link:
http://you.38degrees.org.uk/petitions/save-babies-through-screening
Organizer
Emma Woods
Organizer
