The Old Hack

The Old Hack has received a request for help from a young lady whose baby has recently been diagnosed with Leigh’s Disease. She has been told her baby is unlikely to live beyond the age of seven years.

 The young lady in question has limited literacy skills, and is quite desperate to understand more about the disease and, above all, to be able to have some support from others who have been through what she is presently enduring.

 Leigh’s Disease, otherwise known as Leigh’s Syndrome, is an incurable disease affecting the central nervous system and causing progressive degeneration of motor function, leading to certain death. Fortunately, Leigh’s Disease is rare, affecting just a very small section of the population.

 The saddest thing about Leigh’s Disease, is that its victims are nearly always infants aged between three months and two years. Once a child is diagnosed, life expectancy can vary between about two and seven years, with a very few infants surviving until their mid-teenage years. Although special diet can prolong life expectancy, there is to date no cure.

 The disease is genetic in nature and can be passed by both male and female parents, who may carry the rogue DNA without any prior knowledge or incidence of the disease within their immediate families. Should both parents be carriers of the disease, there is a 25 percent chance of offspring being affected by the disease.

 If you or anyone you know is affected by Leigh’s Syndrome, or can assist in identifying a support network or information source, please contact me and I will pass the relevant information to the baby’s mother. If you are well-connected, please take just a few minutes to relay this request to anyone you know who may be able to help.

 To endure the pain of having a child diagnosed with such a disease is dreadful in itself. To be in the dual position of being unable to communicate easily with others is unimaginable.

 Please help in any way you can. Thank You.