Parents of toddlers need to know the red flags that should not be ignored.
Alarming symptoms, which may occur from birth to 1 year:
- muscle weakness;
- loss or regression of acquired skills;
- problems with breathing, sucking, swallowing.
If a child has these symptoms, you should not hesitate to contact your paediatrician and emphasize the need to test your child for SMA. The paediatrician will decide on additional examinations by a neurologist and geneticist, tests and prescribe a specific SMA test if necessary.
In case testing for SMA is positive you should visit the Ohmatdyt Centre for Orphan Diseases in Kyiv.
In the mentioned centre you can conduct additional testing and analyses and receive the medical commission's conclusion. The medical conclusion is an official document that entitles a child to receive treatment at state expense. With the certificate, a child with SMA can receive a disability, which allows you to use the benefits and, if necessary, start public fundraising for treatment.
At the Ohmatdyt Centre, you will be advised whether a child's age and condition allow being treated with Zolgensma and assisted in registering for the lottery to get Zolgensma and other pharmaceutical producers' programs.
“The Children We Make It" team constantly provides counselling and information support to parents of children with SMA. To get help, call the phone number listed on the website or email us at save.children.sma@gmail.com.
