Leia is currently fighting a rare genetic condition called Dyskeratosis Congentia. This condition causes bone marrow failure and the only cure is a stem cell transplant. Leia urgently needs a stem cell transplant but has yet to find a donor because of her mixed ethnicity. Leia’s best match is likely someone who is of European and/or Persian decent. Only 3.5% of the Canadian Blood Services’ Stemcell Registry is made up of people of mixed ethnicity making it hard for patients like Leia to find a match!
The funds raised will be used directly to cover costs associated with Leias transplant surgery, therapy sessions, the cost to purchase swab kits from a private lab in the US and additional costs for testing when a donor is matched.
All excess funds will be donated to Sick Kids Hospital, which is Canada's leader in child health care, learning and research where Leias doctor, Dr Yigal Dror will use these donations to fund two key clinical trial studies that will help treat and cure this rare condition. The first is focused on analyzing the genotype and phenotype spectrum of dyskeratosis congenita. The second study is not yet underway and is currently requiring philanthropic backing in order to get off the ground. With this study, funds would be used for generating preliminary data to allow submission to CIHR (a large granting agency) for a larger biological study looking at potential therapeutic targets for DKC.
We are urgently reaching out to friends, family and the world to help Leia’s Journey and get her the treatment needed
If you would like to be a stem cell donor, Please click on the link below and fill out the questioner so that we can send you all the info on how to get a swab kit test to you.