10/03/2026
“The hardest part of raising my sons was never the diagnosis.”
People assume the hospital visits are the hardest part.
Or the medical explanations.
Or the long searches for answers.
But the truth is… it's on days when they ask the simplest questions that stops me in my tracks.
Yesterday, Alvin looked at me with those curious eyes of his and asked,
“Mummy… why don’t I look like the other children?”
It's not like it was the first time, but every time, the question pops up, my world pause.
As a parent, we all have this need to want see our child feel confident.
Feel accepted.
Walk into a room without wondering if they belong there.
Alvin would be 15 in a few weeks and I can no longer find the right words to explain the obvious differences.
The missing hair.
The sensitive skin.
No teeth
The curious stares from people who don't understand.
I just took a deep breath, asked the Holy Spirit to help me; before answering him because I knew that moment was crucial.
I held his hands and told him something I have truly come to believe over the years:
“Alvin, you may look different to some people. But different does not mean less. It means you were created uniquely.”
The whole time, praying he understands.
He listened quietly.
Then he smiled, shrugged.
And just like that, he went outside to continue gisting with the other children.
That moment stayed with me and it worries me.
He's getting older, No longer the little boy that a few motivational lines can convince.
Right now, he is looking for acceptance.
He wants to be seen and to walk confidently in a world that doesn't always understand them.
And all I can do as his mother is pray he doesn't lose his courage.
I guess that is why I continue to speak, advocate, and share our story through the Ectodermal Dysplasia Advocacy Initiative.
I believe somewhere out there, another parent may be facing the same questions.
And another child may be wondering if they belong.
If our story can remind even one family that they are not alone, then every difficult moment has meaning.
đź’™
