Kenny was diagnosed with X - Linked Adreno - myleneuropathy in 2013, which is a genetic neurological condition where the Long Chain Fatty Acids attack the central nervous system. He struggles to walk. Since then every treatment option he has tried has failed to work. He is in pain and discomfort every single minute of every single day. I would like to raise money for the ALD - Life charity because they will use the money raised specifically for research on treatment options for these patients.
It is very frightening for our family, because the prognosis is so vague. I pray every day that Kenny stays healthy and independent, but one day we may have to come to terms with the very worst case scenario. (Which i cant even write out because its so upsetting)
Because this is a genetic disease the X chromosome is passed down to each daughter he has and although its very rare for girls to become symptomatic in childhood, it can happen. My daughter shows some symptoms but because she has a lot of other diagnoses this could be a factor in any one of them. Females can present with symtoms in adulthood but because they have 2 X Chromosomes it should be on a lesser scale.
Please follow this link to read more about X - Linked adreno - myleneuropathy, and the other forms relating to this genetic disease.
Please please help me to raise money so that in time more effective treatment options become available and hopefully my girls wont suffer when they get older.