Last Thursday, April 4th 2019 I received a shocking news that my 43 days old nephew is having a rare disease. He has undergone many operations due to birth complications prior to being diagnosed with Pompe Disease. I felt as if the world is crushing on me even though it is my nephew and I couldn’t image what my brother and sister-in-law would feel.
I have no words to say to my brother. Nothing would change and in that very moment I felt that I lost touch with reality.
Like may of us would do, I began to search what is Pompe Disease. Then a further searching led me to an article of father of Pompe Disease child by the name Sivasangaran Kumaran. I felt that I need to reach out to this person to better understand the experience of a caregiver which would be crucial for my brother to learn.
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