Update on Lianka – November 2018
Update on Lianka via Lianka`s Miracle Fund on Facebook (15 November 2018)
“We as family, would like to thank each and everyone who has been and still are praying for Lianka. Thank you for every donation, message and like for her page. Please keep on sharing our princess` story. This past year and month was a long year with a lot of uncertainty of what the future will hold for our little girl.
Lianka`s saliva was taken at Redcross Hospital and sent to America to be tested for 28 genes. With her six month visit to Redcross we received the results and the long and the short is that the gene RYR-1 has tested positive for Central Core Disease, and mom and dad’s saliva will also be send to be tested in America.
The doctors at Redcross as well as everyone walking this road with Lianka is amazed by the progress that she is showing. She is really doing well, is eating, drinking out of her bottle, crawling, and standing up – so we are expecting our little warrior to walk soon.
Okay so this is what was said by the professor at Red cross; Lianka does have a muscle disease. To find out more about this you can go to this website and read more about it https://rarediseases.org/rare-diseases/ryr-1-related-diseases/. As we are not doctors, a lot off this is Greek to us as parents.
Pointers that was made by the professor was that Lianka is still a high-risk for getting lung infections that will set back her muscle development, so she will still not be able to go to créche. If she does go to a playschool, communication with other parents is very important so that she does not come in contact with sick children. We will have to be careful that she does not injure herself as this can also harm her muscles. It is important to keep her weight balanced.
The doctor pointed out that she is a very bright little girl and that we must keep on with what we are doing at home and more. At this stage they are very positive that she will be able to walk and that she will be able to attend a mainstream school.
We as family thank the Lord for his presence in Lianka’s life and we are thankful for this great Miracle. Thank you God where there is life there is Hope.”