Donate to Save Alongkorn's Son's Life

Alongkorn's son was diagnosed with a rare life-threatening disease known as aromatic l-amino decarboxylase (AADC) deficiency. This disease is life-threatening and leaves the child 100% dependent on caregivers. Fortunately, a new and innovative treatment was recently approved!

The treatment is known as gene therapy, and the first brain-administered surgery is available. Our daughter had the same treatment. She went from being unable to move and fighting for her life, to an independent little girl. We are working to make sure Alongkorn's son can have the same.

The GoFundMe only covers the cost of the surgery. All other expenses will be covered by the family. Alongkorn's son is eligible for treatment, so the sooner he gets this life-saving treatment, the sooner he will live a full life.

Support Akin’s Future in the Fight Against a Rare Genetic Disease

My name is Alongkorn Skulareemitr, and I am writing to you with a heavy heart to urgently seek support for my son, Akin. Born in Bangkok, Thailand, Akin is just 1 year and 3 months old. Unfortunately, his journey has been filled with struggles, as he was diagnosed with a very rare genetic condition called Aromatic L-Amino Acid Decarboxylase Deficiency (AADC Deficiency).

A Life-Changing Diagnosis

When Akin was just three months old, we noticed that he was unable to control his head, prompting us to consult a pediatric neurologist. It was discovered that he has significant motor skill impairments (hypotonia). Despite receiving physical therapy six days a week, his condition has not improved.

Every 3-4 days, Akin experiences severe oculogyric crises and dystonia, which can last for 7-8 hours. His eyes deviate upward and laterally, and he suffers from jaw spasms and muscle contractions. He experiences insomnia and cries every 1-2 hours at night. Akin’s development is delayed; he has not yet achieved milestones like head control, crawling, sitting, or speech. He has undergone several tests, including EEG and CT scans, and we are still uncertain of the cause behind his muscle weakness.

In August 2024, Akin was diagnosed with AADC Deficiency, a rare genetic disorder that affects dopamine production in the brain. This neurotransmitter is essential for movement and development, and its deficiency leads to severe developmental delays, movement disorders, muscle weakness, and other debilitating symptoms. As a result, Akin’s development is currently at the level of a newborn, and his condition continues to worsen over time.

A Ray of Hope

At present, Akin is 1 year and 3 months old and has been on conventional medications for several months. However, his condition has not improved, and he is experiencing significant side effects. We had nearly lost hope for his recovery, but recently, a breakthrough treatment has been developed that offers a glimmer of hope: Eladocagene Exuparvovec, a gene therapy that has shown promising results in treating AADC Deficiency.

Children who receive this treatment between the ages of 1.6 to 2 years (the earlier, the better) have demonstrated significant improvements in motor skills, such as sitting and walking. This therapy could alleviate many of the debilitating symptoms of AADC Deficiency and give Akin the opportunity to regain some of his lost abilities and improve his quality of life.

However, the cost of this life-changing treatment is an unimaginable 3.6 million USD, a sum far beyond our ability to afford.

How You Can Help

As parents, our greatest wish is to see our son live an everyday life and have the ability to experience the world around him. We are reaching out to compassionate individuals like you to help make this possible. Please consider donating to our GoFundMe campaign. Every contribution, no matter the size, will go directly toward covering the cost of this treatment. Your generosity will provide Akin with a fighting chance and give him access to the care he desperately needs.

On the other hand, if fundraising goals aren't met or support from pharmaceutical companies isn't available, the funds can still be used to cover future medical costs and provide ongoing care. Proper planning will help the patient receive the necessary treatment while easing financial stress.

You can read an update on Akin’s story.

Thank you for taking the time to read our story and consider our request. Your kindness and generosity will make a life-changing difference for our son, and we will be forever thankful.

With heartfelt gratitude,

Alongkorn Skulareemitr