The family is hoping for a miracle to help with his treatment.
The story was shared through the Facebook page "Little Dayton fights with MLD Metachromatic Leukodystrophy", where one post revealed that Kint Kiatchindarat, or Dayton, is the second child in the family. Dayton is now 2 years and 4 months old, and doctors have diagnosed him with a rare and severe disease. The cost of medication and treatment exceeds 100 million baht—an amount far beyond the reach of his parents, who are middle-class, ordinary salaried workers.
The post also stated that Dayton’s condition is tragic, as this disease is expected to leave him with no more than two years to spend with his parents and older brother. His development will progressively deteriorate across all systems—eventually rendering him unable to sit, swallow, or even breathe on his own.
The doctors mentioned that there is a treatment available abroad, in the United States and the United Kingdom. However, the family faces two major uncertainties: whether the hospitals will accept the case, as they typically only treat patients without symptoms, and whether the parents will be able to raise the 140 million baht required for the treatment.
Looking back, when Dayton was just over 1 year old, his mother took him for a developmental check-up because he was walking later than expected. They consulted several doctors and performed an ultrasound to check for fluid in the brain. The doctors noted a slight increase in fluid and that his head appeared somewhat large, but they found no abnormalities.
As time passed, Dayton still couldn’t walk. His mother took him for a CT brain scan, but again, nothing unusual was detected. However, his development began to regress—he went from being able to stand, sit, and walk a little to being unable to sit up on his own or grasp objects. His speech also diminished.
Dayton then contracted COVID-19, RSV twice, intestinal inflammation, and frequently suffered from a runny nose. Despite her efforts to seek medical help, including an MRI of his spinal cord, the doctors still couldn’t pinpoint the issue.
The doctors later recommended another MRI brain scan along with a Genes Genetics blood test to check for genetic abnormalities. This was because Dayton's arms and legs had become increasingly stiff and tense. The results revealed that he was diagnosed with MLD (Metachromatic Leukodystrophy), a very rare genetic disorder. The only treatment that could potentially cure or improve his condition is gene therapy, which costs approximately 140 million baht.
MLD is a condition caused by a deficiency of the enzyme Arylsulfatase A (ARSA), which plays a crucial role in the production of the protective layer around nerve cells known as myelin sheath. ARSA is responsible for recycling the protein sphingomyelin, a key component of the myelin sheath.
The myelin sheath is critical because it helps increase the speed of nerve signal transmission. Without proper production of the myelin sheath, combined with the accumulation of toxic substances in cells due to the enzyme deficiency, the nerve cells begin to malfunction, deteriorate, and eventually degenerate.
The treatment for MLD focuses on enabling the patient’s cells to produce the ARSA enzyme, which is why gene therapy is essential for addressing this condition.
Dayton’s mother hopes to contact research centers or hospitals in the United States, the UK, or anywhere in the world that can provide treatment as soon as possible. This is because the disease will progressively cause a decline in Dayton's development.
Doctors have advised the family to start fundraising and seek donations to cover the enormous medical expenses and related costs. The goal is to give Dayton a fighting chance and prevent him from losing his life at such a young age. The family is holding onto hope for a miracle.