I just had this done. The genetic counselor was outstanding. While the test didn't show mitochondrial disease, she encouraged me to seek out a muscle biopsy due to my symptoms. Now, after years of illness, I finally have a way forward. So grateful. ❤
Thinking of your beautiful joyous daughter, wife today!!!! Miss her so much!!! What a blessing she was. So glad she is with our precious Savior and we get to see her again.
Looking back at your vlogs gives me hope and keeps me going and motivated to get the medical care we deserve. Even though your gone now, you will never be forgotten Rio chey
I've been following you for many years. You don't know me and at most I've only gotten a like or a simple reply from you. I was sobbing and weeping like a baby when I found out of your passing. Cheyenne, now are enjoying all the food you couldn't enjoy on this earth. Silvino, Lori, and step dad, my deepest condolences ❤ Mis condolencias, Silvino. No te conozco pero se que la amaste y la amarás por siempre. El tiempo y el amor de familia te ayudará en tus malos tiempos.
Wow, we have SO many similarities! Have you ever tried Amlexanox peptides? They are an anti-allergic compound and they were a game changer for my food allergies related to histamine intolerance and MCAS! I take 40mg twice a day now and can eat SO many more foods. You might want to try that! Also, which genetic test did you do? I tend to think a lot of my issues were prompted by genetics.
I followed this lovely young woman for along time and only found out a month ago she had passed I saw alot of people asking where she was untill someone wrote and said it was in shock
I mix my daughters Elecare in a protein mixer bottle. Idk if you’d be okay with using that- but, it’s been a total game changer for mixing her formula and it doesn’t clot on the lid. My daughter has a AMT G-Jet GJ tube. She didn’t have any leakage with the first one and only a little with her 2nd and 3rd. She’s only 3 and tends to be murderous on her bulbs. She used a mic-key and didn’t do nearly as well with it. Maybe requesting a different manufacturer would be a good idea. The only “change” would be the connection sets- which use the enfit connectors to your Farrell and Feed bags. I know this is a few years old- but I just found you. I hope this message finds you well. You’re amazing. Keep fighting the good fight! ❤ we have an extra back pack, extra carry all and a cooler for traveling away from home for more than 30 minutes. Bare minimum I have her backpack and a cooler.
Im so sorry for your lost to her parents an to husband. Please give my love to her furbabbies. How is Teddy an weaslry doing. I really miss Cheyenne an her videos she was so much inspiration to me. My love an prayers are with you alll. 10:00
Bye beautiful girl you fought so hard but your body couldn’t take it any more you will be always missed we will meet at the gates soon RIP 🪽😇 🪽 🙏 🤲 🌹 💐 📿
Very sad. RIP. It’s a tragedy that it’s so difficult to intervene, mental health is so poorly managed, especially her particular illness. Thoughts with you all.
Thank you very much. I'm with a weird reumatologycal disease and I can understand your point. Thank you for sharing your courage and the knowledge u have about your disease. I pray to God to help you and give you enough faith and strength to struggle with this situation. A honest hug.❤❤❤
I’m so sorry sweet girl. I will miss you 😢 I’m glad you’re not in pain anymore ... I’ve watched you for a long time and always thought you were so courageous, strong and funny. You will be missed. rip
I never thought I could miss so someone so much I never met. You were always so positive and brave. You're still brave. I hope heaven is as beautiful as you've ever imagined. ❤
You will be forever missed ❤ Thank you for all you brought to this world and the differences you made. Your memory will live on through all you've contributed to this community we will never forget and we will keep fighting. Fly high angel ❤🖤🤍
RIP Cheyanne I’m glad you aren’t suffering 👼🏼🤍 I will miss you so much, 😢 I Hope your eating and drinking tasty things in the next life, I Hope to see you again some day.
RIP Cheyanne. Condolences and prayers to her family, friends, and Silvino. ❤️ Happy for you that you got to try pancakes and Chick-Fila with your new stomach before you left us!
Hi I have mast cell. Zero safe foods I have been on kate farms feeding foemual since decemeber. Does pollen set you off? Do you have burning bones when in a flare? What's a flare like to you? What medication has helped
