Suze (2018) is Patrick and Hanneke’s sixth child. Hanneke describes Suze as their miracle baby, because her conception was medically impossible due to cancer treatment of Patrick.
Besides worries for Suze, Patrick had a severe health battle for himself. He needed to fight cancer once again. (Thankfully he survived)
After a long search after birth it turned out that Suze has a rare mutation in AGO2, which causes her to need round-the-clock care. Something her parents do with all of their heart. She is tube-fed for instance, suffers from severe reflux and can’t walk. Her upper-body strength is small. And Suze suffers from seizures.
The care surrounding Suze causes great financial stress, because this is largely not covered by insurance.
The family has founded Stichting Suze www.stichtingsuze.nl, where you can follow their journey and offer support.
A poem by Suze's mom
This afternoon Sarah (10 years) was suddenly in tears...
She sometimes still fears that she will lose Suze.
Very sad, yet so pure and sincere.
In such moments we talk and cuddle with each other,
and then extra with Suze!
Because I can't take away their fear,
but how proud we are of our 6 children!
They too did not choose this situation.
Growing up as young carers.
And they just get it on their plate.
From intensive care at home to moving house.
Of course we do our best to give the other children a happy childhood.
They have their own sports activities.
And we regularly try to create 1-on-1 moments.
This may even include taking them to therapy swimming with Suze.
But also shopping together, going to a concert or cooking with dad.
And always unpredictability!
Is Suze not well, and has to go to the hospital?
Then Daddy is at home and Mommy goes with Suze.
But do we really realize,
our family is not an average family,
but a family that runs on love.
And on a day like today I scroll through my phone,
and see so many precious brother/sister moments.
Suze is lucky to have such a wonderful brother and 4 sisters.
Dear Elise, Sem, Anne, Emma & Sarah,
know that we are very proud of you.
And will always be there for you!
Thank you for all your love for your little sister,
she is lucky with you!
You make her life more fun.
Love, Hanneke
