A viral post on Thai social media has captured the hearts of its readers. Baby Dayton’s story has captured the hearts of its readers as the family’s story was reposted by Facebook page Drama-addict; a 2-year old boy suffering from a rare disease with treatment costs could reach 140 million baht.
Baby Kint Kiatchindarat, or more commonly known online as Baby Dayton, is diagnosed with a rare genetic disease called MLD, or Metachromatic Leukodystrophy. MLD is a rare hereditary disease characterized by the “accumulation of fats called sulfatides, that causes the destruction of the protective fatty layer (myelin sheath) surrounding the nerves in both the central nervous system and the peripheral nervous system,” as described on rarediseases.org.
According to a The Nation story, Dayton’s MLD only gives him a life expectancy of not more than 3 years. His development will continue to deteriorate; rendering him unable to sit, swallow, or even breathe on his own.
There is available treatment in the U.S and the U.K. However, the family is uncertain whether the hospital will accept their case, as they only treat patients without symptoms, and whether the family can shoulder the 140 million baht required for the treatment.
When Dayton was over 1 year old, the mother took him for a developmental check-up as the family observed there was a delay in his walking. They consulted several doctors and performed tests and to check for fluid in the brain, and results came that there is a slight increase in fluid, and that Baby Dayton’s head appeared a bit larger, but with no abnormalities.
Gradually, Dayton still couldn’t walk. His mother took him for a CT brain scan but no abnormalities were detected, however, health continues to deteriorate; he went from being able to stand, sit, and walk a little to being unable to do anything on his own. His speech also was affected.
Dayton also contracted COVID, RSV twice, intestinal inflammation, and frequently suffered from a runny nose, the same report states. Further tests were conducted but to no avail.
Doctors have observed that Dayton’s arms and legs had become increasingly stiff and tense, so they eventually recommended another MRI brain scan along with a Genes Genetics blood test, a test for genetic abnormalities. The results came out that he had MLD.
The treatment for MLD uses gene therapy focused on enabling the patient’s cell to produce the needed ARSA enzyme.
Dayton’s family wishes to contact research centers and hospitals in the U.S or the U.K, or any country willing to provide the necessary treatment as soon as possible.
The family is seeking donations to cover the extensive financial burden as both parents are middle-class, ordinary salaried workers.
Secondary source: Facebook