Richard Habis: Hemophilia Does Not Only Affect the Child
Richard Habis, Senior Client Partner at Savana and Chair of the Scientific Committee at Ashemadrid, shared a post on LinkedIn:
”Hemophilia does not only affect the child.
It affects the whole family.
It changes how you look at a playground.
How you react to a bruise.
How you trust a school.
How you sleep after a fall.
How you decide whether to say ‘yes’ or ‘no’ when your child simply wants to live like everyone else.
For years, our instinct was to protect Mario from everything.
The head bumps.
The hospital visits.
The difficult veins.
The port.
The fear of the unknown.
The comments from other children.
The impossible balance between keeping him safe and not making him feel fragile.
And then, slowly, you realise something uncomfortable:
Sometimes the biggest obstacle is not haemophilia itself.
It is fear.
Our fear as parents.
Our need to control.
Our instinct to protect so much that we risk limiting the very independence our children need to build.
This documentary is about that journey.
Not the perfect version.
The real one.
From fear to trust.
From protection to confidence.
From doing everything for him, to watching him take ownership of his own life.
Seeing Mario speak about his experience, his treatment routine, and meeting another boy living with hemophilia was deeply emotional.
Because this is what every parent ultimately hopes for:
Not a life without challenges.
But a child who grows strong enough to face them.
Thank you to Sobi, Believe Ltd, Jason, Evelyn, Rob, Angelika and Finn for helping tell this story with honesty and care.”
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