Maci’s Story

Maci was diagnosed with DIPG 2/22/2011. Just in case you missed the quick note any donations can be sent to The Maci Winebarger Donation Fund at Carter Bank & Trust P.O. Box 303 New Castle, VA 24127We have had a whole lot of questions about this and needed to clarify. Again, thank you.

Latest Journal Update

We Are Still Here

I have not been updating as you can tell. Most of our followers are on Facebook and have kept up from there. I thought I would add a note since it has been forever.


We have been in Baltimore over 3 weeks now doing an intensive therapy program. Looking forward to going home this weekend. Maci and I flew to Fort Worth to see doctors there regarding a surgery called DBS (Deep Brain Stimulation). This would improve the involuntary jerking movements that do not allow her to get her balance. We have been trying a few additional meds first. They are typically used for Parkinson's. The last two have not worked out well due to bad side effects. We have one more to try before we got the surgery route.


As you can see from the pics I added my little girl is growing up fast. Tomorrow will be four years since her surgery. Wow! So amazed how much God has blessed us.
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Comments

4 Comments

Sheila Jones
By Sheila Jones "Always Sammy's Grammie"
Omg...she is indeed growing up! 💗
Thank you for updating!!
Vicki & Jim Eubank
By Vicki & Jim Eubank
What a beautiful young lady! so happy to see this in my email today. You all are still in our thoughts and sincere prayers! Hope that whatever route you decide to go with, will be the miracle that we all pray for. God Bless each of you, and thank you for continuing to share Maci's story! Go Maci!!!!
Mary Sweeney
By Mary Sweeney
Praying for Maci.
Patty Southard
By Patty Southard
So glad you made this post I had been wondering how y'all were doing, since I don't have you on fb. I will look to add you. We are back at St Jude for check-up, coming up on 5 years cancer free :)