Everything was normal during my second pregnancy, but Arne was born with developmental disability. It was unexpected, and his father and I were totally unprepared and uninformed.

He was about three months old when the “petit mal” seizures started, and the expected growth markers exhibited by normal infants were slow or lacking. At first, cerebral palsy was the diagnosis. But further neurological test revealed medical issues that were still “unknown” to his pediatricians and neurologists at that time. Arne was around five years old when the Myelin Research Project was launched, and later, his developmental disability was diagnosed as due to “delayed myelination.”

Raising a child with a disability that requires total care is hard. But for the most part, a family can only conform to the practical wisdom of “you just got to do what you got to do”. It’s going through the cycle of surviving, reviving, and thriving. Everyday.

Years later, I wrote a short memoir about Arne which was published on the website of the United Leukodystrophy Foundation. Here’s an excerpt:

The doctor leaned back on his chair and said, “There is nothing that can be done with your son’s condition.” I wanted to ask, “Would he be able to walk? Talk?” But before I could interrupt him, he continued, “He will need a lot of care.” I wanted to snap, yeah, I heard that already. Then he looked at me and said, “But life is precious. It is also resilient.“

(Read the full story here: https://ulf.org/2023/03/arne/