An interview on CHARGE syndrome

6 10 2016

Last Tuesday, October 4th, I was interviewed on live radio by Paula Romero, on her weekly show La Caja de Pandora, where she discusses everything related to disabilities in the broadest sense of the term. Her program themes range from Alzheimer’s disease, autism, rare syndromes, to interviews with parents fighting against the shutting down of special needs institutions or units.

A mutual friend connected us through facebook and Paula asked if she could interview me. I accepted.

This is the link to the interview. I’m on after minute 19, after Barbara Streisand… It’s in Spanish:

la10radio

La Caja de Pandora

Paula Romero has a daughter with CHARGE syndrome. In fact, we heard about Paula’s case when we moved to Tenerife in 2010 and I’ve been looking for her since. Now, six years later, I find her (or she finds me) and we talk in her show. This makes me extremely grateful. Dácil’s first pediatrician, not the specialist at the hospital, but the regular one we were assigned to when we moved to La Orotava, told us he had heard of another case of CHARGE here in Tenerife. Our hospital team in Holland told us to look for someone in Tenerife who would have some experience with either CHARGE or some other syndrome with multiple defects as it would be easier to get suitable help for Dácil.

None of this, however, was possible here. We were sent to the Hospital in La Laguna, because we live in the North of Tenerife. We found out that the doctor treating this (to us unknown) girl with CHARGE worked in the Candelaria Hospital in Santa Cruz. Only for capital or South Tenerife residents. We found out her name. We phoned, asked, tried, but we could not get through to her and I simply could not understand (not until today) why we should not see this doctor with CHARGE experience and had to go somewhere where no-one had ever heard of CHARGE. It was very frustrating.

And here I am, writing about my meeting with Paula, Naomi’s mother. She told me all about Naomi, who was born in 1970, long before anyone, anywhere (let alone here) knew anything about CHARGE. Naomi is going to be 46 in December.

This meeting, our conversation, the interview, it somehow feels as if part of a puzzle has fallen into place. I wasn’t even aware that this puzzle was still there…


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