Netizens unite to help Thai child with rare disease

Family pays more than B100 million in costs for highly specialized protein treatment

A Thai child has been diagnosed with Aromatic L-amino acid decarboxylase deficiency ( AADC Deficiency ), a rare genetic disorder that only affects about 130 people worldwide. A wave of support has been online.

The one-year-old child, identified only as Akin, is receiving treatment at King Chulalongkorn Memorial Hospital in Bangkok, where the family faces staggering medical expenses of up to €3 million, ( 105 million baht ) for specialised gene therapy.

The situation hampers the capability of the body to produce important neurotransmitters like as epinephrine, dopamine and serotonin, drastically limiting the child’s everyday life.

Individuals with AADC deficiency not reach developmental milestones and have little to no practical motor movement. They require lifelong maintenance, and they are particularly vulnerable to premature death in their first ten years of life.

The expensive protein treatment regimen Eladocagene exuparvovec, which comes with a high price tag, is the required treatment.

Akin’s community has turned to other treatment options after the condition’s first three children, who have been able to participate in substance tests. &nbsp,

King Chulalongkorn Hospital has negotiated with a pharmaceutical firm to lower the cost from €3.6 million to €3 million because it needs to self-finance. Akin’s papa, who is a doctor, is doing everything he is to secure the necessary funds.

The father began raising money after learning that there were only 25 participants in the prosecution lane in the United States. China, which is also conducting investigations, limits its tests to private individuals.

The father announced on Akin’s funding Facebook page on January 4 that his baby is already 15 months old. He advised starting care between the ages of 18 and 30 to get the best results.

Internet consumers have been sharing a GoFundMe campaign started by Richard E. Poulin III and Judy Wei following their mother’s own AADC deficit treatment in a show of solidarity.

Contributors&nbsp, are encouraged to visit&nbsp, www. gofundme .com&nbsp, to support Akin and his family in their time of need.