Sending encouragement to “Nong Dayton”, 2 years old, suffering from a rare disease, treatment costs soar to 140 million baht.
Online, people are sharing and sending encouragement to the page “Little Dayton Fights MLD Metachromatic Leukodystrophy” that shared the story of a 2-year-old boy suffering from a rare disease with a high cost of treatment exceeding 100 million baht. The page stated the following message:
“Hello, my name is Dayton. My name means the bright season of my parents. *I am the second child. I have an older brother named Wint. I like to play with my brother and my mother likes to take me out often.
Now I am 2.4 years old. The doctor said that I have a serious disease, an extremely rare disease. The cost of medicine and treatment is more than 100 million baht, which is more than my parents, who are middle-class salaried people, can afford to find a cure for. I am unfortunate that this disease will only give me 2 more years to live with my parents and older brother. My development will regress in every system. I may not be able to sit, eat, swallow, and eventually may not be able to breathe on my own.
The doctor told me that there is medicine abroad, as far away as America or England. My parents are preparing to take me on a long journey. But there is only one problem. I don’t know if they will accept my case. The doctor said that they will accept people who do not yet have symptoms. And for the second infection, I don’t know if my parents will be able to find the money to treat me. It is more than 140 million baht.
Back when my mother was pregnant with me, she took good care of herself and raised me well. She did everything to get milk. I breastfed until I was one year old. -I grew up with a good weight and was healthy and developed according to my age. I have a cute and adorable face. I’m playful. I like animals. I’ve started to talk a little, but I’m not good at walking. I can only hold on to stand.
When I was a little over a year old, my mother took me for a developmental checkup. The doctor said that I was good and in every way for my age. I just walked slowly and was lazy. My mother took me to see many doctors. I had an ultrasound to look for fluid in my brain. The doctor said that there was a little bit of fluid because my head looked quite big and my fontanelle was not closed yet. However, they did not find anything unusual.
As time passed, I still could not walk. My mother took me to get a CT scan of my brain, but nothing else was found. From almost one year old to over one year old, my development regressed. From standing, sitting, and walking a little, I started to be unable to sit on my own, unable to pick up much, and spoke less. My cheerfulness decreased. I was cranky and crying a lot. I got sick often because my brother went to nursery school. In the first year, I had COVID, RSV twice, enteritis, and often had a runny nose. But those illnesses were not the reasons why I did not walk.
My mother tried to take me to the doctor until the doctor requested an MRI of my spinal cord because they suspected something was wrong, but they still didn’t find anything.
My legs became more tense. I couldn’t balance myself anymore. +I could barely lift my arms to do anything. I started to follow my mother’s commands less and less. My eyes started to roll over. My neck became weak like a newborn baby’s.
I have difficulty sleeping and eating because I have many food allergies. I am allergic to the Top 8. I can’t drink cow’s milk, eggs, or nuts. I can only drink rice milk. I also have bowel movements. I cry every time I poop. Even though I am difficult to raise, my parents are willing to take good care of me. No matter what, my mother takes me and Win on trips very often. I am happy. I like to go to the beach with my mother, father, and Win. I like playing in the เล่นเกมคาสิโน UFABET ทันสมัย ฝากถอนง่าย water. I want to run and play. I want to get better.
My mother tried to find a way to take me to check at many hospitals. The doctor ordered a metabolic test because I had difficulty defecating. The results were still nothing unusual.
The doctor had my mother have another MRI of her brain and a Genes Genetics blood test to check for genetic abnormalities because my legs and arms were getting tighter and tighter. Plus, my body was doing less and less like a 4-6 month old baby.
• I spent almost a year getting tested. Do you want to know what’s wrong with me? I have MLD, a very rare genetic disease called Metachromatic Leukodystrophy.
• The only way to recover or get better is Gene therapy, which costs around 140 million baht. This disease is MLD: Metachromatic leukodystrophy, a disease caused by a deficiency of the enzyme Arylsulfatase A (ARSA), which plays an important role in the process of creating nerve cell membranes (Myelin), and has the function of recycling the protein Sphingomyelin (which powdered milk companies like to advertise, but our bodies can normally create it themselves).
The membrane of nerve cells is very important because it helps to speed up the conduction of nerve impulses. When the membrane is not well made + there is a buildup of substances in the cells from the lack of enzymes, the nerve cells will malfunction, deteriorate and eventually decline.
What is gene therapy? It is the process of inserting a normal gene into a patient’s cells to correct the cause of the disease. In treating MLD, the patient’s cells must be able to create the enzyme ARSA.
My mother hoped that she would contact a research center, a hospital in America or the UK or anywhere in the world to get treatment for me as soon as possible because this disease would make me deteriorate more and more, and my day would come faster.
So the doctor suggested that my family raise funds to donate for my treatment and expenses.
Thank you in advance to the kind adults. My mother will take care of it as soon as possible, correctly and transparently.
I want to be able to walk again, eat, talk, and play with my brother like before. *I don’t want to leave at the age of just a few. I hope there will be a miracle.
Later, the mother updated the post again, stating that:
“This message, Mom wrote with good intentions, to have someone help her child, to help contact some people, but has not received any donations yet. If someone contacts her for treatment, Mom will ask for donations again. Thank you to everyone who is willing to help.”