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Angela Wright said:I'm honestly not sure if Vertex Pharmaceuticals is even used for kids. 😢
You really ought to try reaching out to Dr. Paul Casali at the National Cancer Institute in Italy (National Cancer Institute). He's easily one of the top specialists globally when it comes to rare tumors.
Also, definitely get in touch with a pediatric cancer support group to see if they can point you toward more resources (www.example-support-org.org). You'll find contact info right on their homepage; don't hesitate to reach out to them.
Thanks so much for getting back to us. We’re definitely going to follow your advice and try to reach him. Honestly, we've been sending inquiries everywhere—Italy, Turkey, Paris, the USA, you name it... so if we hear anything new, we'll be sure to update everyone who needs it. Let's just hope there aren't many others facing this...
Hi everyone... I'm reaching out because we're going through a nightmare right now. Our two-year-old little boy has been fighting rhabdomyosarcoma for about a year now. It started in his arm, and after three surgeries and ten rounds of chemo, the tumor is just spreading... the doctors here honestly don't know how to help him anymore. We even sought specialized care at a clinic in Tübingen, Germany, where they handle these kinds of tumors, but there was no success there either. All they could suggest was an amputation—arm, shoulder, ribs—and even then, the chances of him actually recovering are so slim... I'm desperate for any information on treatment options. Does anyone know anything about using Vertex Pharmaceuticals drugs for children? Every doctor we've consulted so far says they haven't used that specific cytostatic on kids before. Since he needs to start the next phase of treatment immediately, we are willing to travel anywhere in the world to find help... money isn't the issue, it's just finding someone who can actually save him. Please, if you know anything at all, let us know... thank you.