MacKenzie's Fight

On March 28th, 2014 we officially began our family with the arrival of our beautiful daughter MacKenzie. All things considered, her early times were as any other infant. It wasn't until we began to note missed milestones (specifically gross motor delays) that we realized something was a miss. Over the next 18 mos, MacKenzie underwent rigorous tests to find a reason for her delays. Then in Jan of 2017, we recieved the news...MacKenzie suffers from a very rare genetic disorder; Aicardi-Goutieres Syndrome (AGS). Little is known about this disorder, but it is known to be progressive in nature. We have found that there is promising work being done in both the US and Europe, and have successfully obtained enrollment in a US born study for a medication to aid in slowing (or perhaps ceasing) the progression of the disorder. As this disorder is progressive, there is the fear that MacKenzie may lose some/all of her abilities to walk, crawl, speak etc... which is why we are so fervently seeking aid. The study takes place in Philadelphia at The Childrens Hospital of Philadelphia (CHOP) and requires periodic monitoring; every 2 mos. Although the medication is supplied, any other expenses is not ie. Travel, lodging, food etc...MacKenize is as happy as any other child, and wakes up every day with a beautiful smile on her face, unbeknownst to the dangers within. With the help of those who donate, MacKenzie has a chance to continue to live life to the fullest and continue to brighten the day of anyone who meets her with her infectious smile and laugh, and continue to be the great big sister she is. I know that MacKenzie is forever grateful to anyone who can help her attain this. Thank-you! MacKenzie and the rest of the Lalonde-Stiff Family!