Parents: Allycia (mom) and Craig (dad)
Child with Rett syndrome: Mackenzie, age 6, diagnosed at age 1
Sister: Parker, age 3
How does Mackenzie inspire you?
Mackenzie inspires us each and every day with her bravery and positivity. She faces so many hardships and always does it with a smile.
What does your family like to do to spend time together?
We enjoy going out on our boat together and getting ice cream. We also really enjoy playing games together and going to the movies.
Can you share a Rett-related story about something that made you extra proud of Mackenzie’s sister Parker?
Parker is only 3, but whenever we meet someone new, even if it is on the playground, she introduces herself and then introduces her sister "Mack," and says she cannot talk or walk "yet," but she is really fun and understands everything. This makes us so proud because she truly adores her sister and always wants to include her.
How have you taken action to accelerate a cure for Rett syndrome?
We have a fundraiser called "Mack’s Crabfeast & Cornhole for a Cure." We have done two of these crab feasts since she was diagnosed and raised about $12,000 for RSRT each time. We also had a carryout for a cure dinner (during COVID) and raised about $2,000 at each of those events.
How has your community reacted to your outreach to raise awareness and fundraising for a Rett cure?
Our family, friends, and community have been extremely generous and donated to each of our fundraisers. Mackenzie’s American Heritage Girls troop even did their own lasagna dinner fundraiser this September to raise money for RSRT in honor of their troop member Mack. This was heartwarming and also raised awareness among Mackenzie’s peers.
When you’ve been involved in raising awareness and fundraising, has there been anything surprising to you in terms of what you’ve learned?
I am always surprised by how many people have never heard of Rett syndrome, although prior to Mackenzie’s diagnosis I had never heard of it either.
Please share some reasons you are hopeful about the current research for a Rett cure.
Our family chooses daily to be hopeful for a cure. There are times when this is hard because it seems like it is taking longer than we would like, but we put our hope in God, and we know there are so many companies working on gene therapies and other therapies for Rett syndrome. We are also really encouraged by the fact that Rett syndrome was reversible in young and old mice, proving it is not degenerative. We try to keep informed of all the latest information and research. This really is an exciting time in science.
What is your advice for a family who has recently received the Rett diagnosis?
My advice would be that your child is the same child today as they were prior to their diagnosis. A diagnosis gives you a path of helpful information and a SUPER SUPPORTIVE community, but it does not change the fact that your child is unique. Do not read too much on Google because your experiences will be different from others’. Not every child experiences every symptom of Rett, so don't get yourself downhearted worrying about what will come next. Enjoy today and remain hopeful for a better tomorrow ... and please help us fund more research for a cure.