If this feels urgent, stop reading and get emergency help now.
This page is not a substitute for emergency care. If your child has severe breathing trouble, collapse, blue lips, severe chest symptoms, extreme lethargy, or anything that feels medically dangerous, call emergency services now.
Call first
Emergency numbers
Australia
000
United States / Canada
911
United Kingdom
999
Europe
112
If you are elsewhere, use your local emergency number immediately.
What to say
The fastest useful script
Say what is happening right now, not the whole history first
Say your child has Alström syndrome if that is confirmed or strongly suspected
Name the symptom that feels urgent: breathing, heart symptoms, collapse, severe lethargy, feeding difficulty, or another acute change
Have recent medications, diagnoses, and hospital letters ready if possible, but do not delay calling for them
After you have called
Useful things to have ready
Your child’s full name and date of birth
Any known heart, breathing, metabolic, or kidney concerns
Current medications
Recent hospital letters or specialist contact details if they are easy to grab
Your own short description of what changed and when it started
After the urgent moment passes
Come back to the care-planning pages only when the immediate medical risk has been handled.
