Jaimi Harding, mom to AHC Champion Lexi (AZ, USA) shared the following testimonial about her experience with the Duke Multidisciplinary AHC Clinic, and our efforts as a support organization. She wanted us to share it here in our newsletter. Thank you Jaimi for the kind words!
This is going to be a long post. It took us 40hrs drive time in 4 days to get to Lexi’s 3yr follow up with the AHC multidisciplinary clinic and things went well. All of the doctors were so happy with the progress she has made. They have added a couple of new tests and also some therapy evals into the clinic which I think was a smart idea because they were able to give us a few ideas that Lexi’s therapist had not thought of. I want to say that each and every doctor involved in the clinic is very caring and listens to your concerns and addresses them in a timely manner. I wouldn’t want to take Lexi anywhere else for her AHC care. AHC is a 1 in a million disease and the doctors at Duke are doing everything in there power to find a treatment or a cure. Lexi is the first kid in the United States under Dr Mikati’s care to receive solumedrol treatments and it has helped her tremendously and some would say that I am crazy because I am letting them use her as a Guinea pig but anyone that has a brain larger than a pea knows that being a Doctor (practicing medicine) is trial and error especially in cases where they are so rare how do you know what’s going to work if you don’t try it. I am willing to try anything to help save my daughters life because the reality of this disease is they don’t know how long she will live and if I have to try new meds to see if it will stop her muscles (I.E. heart, lungs, every muscle in the body) from going Paralyzed then that’s what I am willing to do. Are there risk involved with trial and error you bet but we know the risk if we don’t try also. So I want to give a big Thank you to all of the AHC clinic for all you do for the AHC kids. And CureAHC wow what can I say about this foundation they are simply a blessing. They have been there with us since literally day one of Lexi’s diagnosis and I can’t thank them enough. They are not only there to help the doctors but they are there for the families and we are so blessed to be a part of it. Thank you so much Cure AHC. Also we were able to stay at the Ronald McDonald house and when we arrived Lexi seen the maintenance guy Mauro and she told him I home ?and gave him the biggest hug. Then another AHC kiddo Molly came and visited and Lexi didn’t want to let her leave??. We were also able to see some of the ladies that still work there but missed a few, Sorry Ladies. Then a very close family the Stanley’s came by to see us and we caught up on how things were going and Lexi loved every minute of seeing Jaylen (See yall next year). Now for the rest of our trip Lexi did AMAZING she only had one 4 minute seizure and did not require medication, that was on the 10th and she has been great ever since. We took a different route home so we could take more breaks and we were able to see family and friends along the way. We stopped in Florida (Thank you Branda for letting us stay with you) and Lexi got to see lots of puppies and a pet snake and lord did she love that. Then we made our way to Waco and we spent two nights there and seen Lexi’s best friend Neeley. Then she got to see her two fav nurses (The Best) Jennifer and Amy and their families. It was such a great trip and it was amazing to see how Lexi remembered the kids, it was like they never skipped a beat. We love and miss y’all. And when we finally got home and she seen her Daddy’s truck she said daddy home and couldn’t wait to hug him?. I want to thank everyone that helped make this trip possible by donating or purchasing a shirt. The trip was well worth it and now we have lots of info for her doctors. Thank you all for the continued love prayers and support.