About Donation Page in Honour of Madelyn Kilner
Thank you so much for supporting Maddie. We are fundraising for SickKids to help do breakthrough research on SCN8A. SCN8A is an extremely rare and very serious genetic disorder. Maddie is one of less than 500 kids in the world with this disorder. While it is genetic, it is completely random and not hereditary. Mutations on the SCN8A gene like Maddie’s cause severe epilepsy and development delays including a high risk of development plateaus- most kids do not walk and talk. There are other medical challenges too for our sweet Maddie.
In Maddie’s first year, starting at 4 months old, she had over 30 seizures + 5 minutes long. She has spent several weeks at SickKids with drug refractory seizures. She also faces many development challenges including the ability to speak and walk by herself. Although this has been tough for our precious Maddie, she always has a big smile, gives the best hugs and is incredibly determined. We are so proud of her and forever grateful for the amazing care Maddie has received throughout her life at SickKids. We thank you so much for your support to our family, as we work towards finding a cure for our brave little Maddie.
If you would like to read more about Maddie's story, please click HERE or please follow her story on Instagram @bravemaddie.
Our initial fundraising goal of $75,000 was to support SCN8A priorities at SickKids, which includes a research study on Potential Biomarkers by Dr. Rosanna Weksberg of SickKids. We are so thrilled that we were able to meet this goal. We are now working towards raising $125,000, which will allow Dr. Weksberg to add additional patients into the study and will support SCN8A activities at SickKids.
Thank you so much for your support.
Julia, Cam and Maddie
Date
Starts at: October 31, 2021 11:00 PM
Ends at: October 31, 2021 11:15 PM
Location
,
Contact
Julia Sisnett
jsisnett@gmail.com
Funds raised, through this fundraising page, will support SCN8A priorities at SickKids, which includes a research study on Potential Biomarkers by Dr. Rosanna Weksberg of SickKids. The initial fundraising goal to support this research study is $75,000, and all donations made beyond this will allow Dr. Weksberg to add additional patients into the study and will support SCN8A activities at SickKids.
Dr. Weksberg's research study will test banked DNA or blood from patients to look for changes in tags on the DNA caused by the mutation in SCN8A. If these are present, they will tell us about which genes other than SCN8A are involved, and this could provide biomarkers for the development of new treatments.
