Since there are no experts on SCLS in Holland or most countries, my earnest recommendation is that your pediatrician make an appointment for your daughter to be seen by Europe's leading expert on SCLS:
Prof. Dr. Zahir Amoura, Département de Médecine Interne, Hôpital de la Pitié-Salpêtrière, Bd. de l'Hôpital 83, Paris 13e, tél. 0033 1 4217 8001,
email email@example.com, and for appointment information see https://www.aphp.fr/offre-de-soin/medecin/505439/066/04
He is often overbooked and thus hard to see, but he has a younger colleague that she could otherwise see: Dr. Marc Pineton de Chambrun, tel 0033 1 4217 7832, email firstname.lastname@example.org, and for appointment information see https://www.aphp.fr/offre-de-soin/medecin/3280725/066/59
To make the eventual trip to Paris most productive, make sure that your pediatrician prepares a summary in English or French of your daughter's medical history, to be emailed ahead of time to Dr. Amoura or Dr. de Chambrun, and/or that she takes it with her to her appointment.