05/05/2026
ARF family, please 🙏🏼 pray for this little sweetie.
Iris has had a rough time this hospital trip. I’m going to be completely honest…we thought we might lose her Friday. It was beyond terrifying. We haven’t been that scared since September or October. I don’t think I’ve fully processed how terrified I was and I doubt Casey has either.
We pulled Owen out of school early in case he needed to come down to the hospital to stay goodbye and Casey skipped the baseball game he was going to coach so he could race to the hospital in case it was our last moments with Iris. The staff and I bagged Iris for 3 hours straight. Every time we stopped bagging and put her back on her vent she had dystonia episodes forcing her muscles to fight against the vent and preventing from breathing for her. It was heart wrenching. I didn’t know if her body could handle anymore at any second. If you have never bagged your child, forcing air into their lungs while praying and pleading with God to just let her to let us breathe for her, count yourself as blessed. Words cannot describe the reality that is our lives. We had to sedate her so much to get her body to relax and allow the vent to breathe for her which finally worked after 3 hours straight of crisis.
Iris turned a corner after she got the Botox that she needed and is no longer having desaturations with pooping which is HUGE! It’s not a forever fix and it was really hard to get any doctor in the hospital to do her Botox. It will most likely wear off within the next 6-8 weeks again and we will be back in the same boat. We are so grateful for this temporary relief for our sweet girl but this battle is so far from over. It’s only just begun.
Iris is having episodes of Dystonia quite frequently. Thankfully, after the Botox she is no longer needing bagged (her version of the breathing part of CPR with her Trach). However she is still arching her back in crazy ways and looks quite uncomfortable. We are meeting with new specialists to see if they have recommendations of meds to help. It’s such a fine line…how do we help Iris find relief but not have her so doped up that she is basically sleeping all day. We love her sweet and sassy personality and want to see more of that, not less.
We are hopeful that Iris will be able to come home again in the next week or two and stay for awhile at home before the next episode. Before she comes home, she needs a new central line placed and a full body CT to make sure that the yeast infection didn’t leach onto any organs (this would be really, really bad if it did). Please pray for these to both go well.
This hospital trip reminded us so clearly that time is our enemy as much as Mitochondrial Disease. We don’t have any time to waste, yet we don’t have anyone yet who is willing to take a chance and develop gene therapy for our Iris. We found new research that shows that gene therapy was successful on the MRPL39 gene in a Petri dish(the exact gene that houses Iris’ mutations). This is HUGE!! It’s no longer theoretical! We just need someone to take a chance on this gene therapy with Iris and we need it soon.
I’m going to be very straightforward here: it is Iris’ ONLY chance at survival. Without straight divine intervention or gene therapy, Iris’ time on Earth is limited. Severely limited. I’m not talking about life expectancy to early 20’s. I’m telling you that she has already surpassed her life expectancy and we are living every day on borrowed time. This reality is enough to completely gut any mother or father. We need help. We need someone to take a chance on Iris. We need to save our sweet girl and we need it soon.
Please Lord send us to the right person who can help us save Iris. Please…I can’t bury my baby. We have to save her. I just know there is someone out there willing to help us. The science is there, it isn’t science fiction. Please Lord send us someone to help Iris in time.
Please help us by sharing this website everywhere possible: https://hopeforiris.com/
We need to get her info into the hands of some doctor or researcher who can help her and help us to save our little girl.
