Millie's Miles Virtual 5K Fundraiser

Help support Millie as she fundraises for her upcoming surgery in Florida! In March 2021, Millie will be having surgery with Dr. Feldman,  an Arthrogryposis Multiplex Congenita (AMC) specialist, in Florida that will require a stay of several weeks for outpatient follow up. This trip will be quite costly, and proceeds from this virtual 5K will go directly to the expenses of the procedure, housing, travel, food, and potentially a fun event such as an aquarium. Hopefully, Millie will have full use of her dominant arm after this procedure, which would be very helpful for her moving forward in school. 

You are under no obligation to run this 5K, as the saying goes- "Run, Walk, Crawl, or be Dragged!" However, if you complete this 5K, we would love to have you send us a video or picture at some point before/during/ or after the race encouraging Millie and sending healing thoughts her way! Send any pictures or videos to (859)319-1684.

Hey y’all! I’ve been asked to share a little more about Millie’s upcoming surgery, her diagnosis, and how this impacts her life. Sometimes it’s easy to get lost in the medical lingo, so I’m going to do my best to explain it in every day terms to help everyone understand.

Millies diagnosis for her arms is called AMC or arthrogryposis multiplex congenita. I’ve included some great graphics that help explain AMC, but essentially it is where there are 3 or more joints in 2 or more areas of the body that are “contracted” or pulled in. You can see in the image I’ve included of Millie, that she is affected in her fingers, wrists, elbows, and shoulders on both arms. In ADDITION to this, Millie’s radial head (one of the 2 bones in your forearm) was dislocated while she was in her birth mommies tummy. This dislocation keeps her from straightening it, ever. The way hers is dislocated, it cannot simply be popped back into place, leaving it permanently dislocated without proper surgery. But, because Millie has AMC in her elbows, surgery is a bit trickier, which is why we have consulted with Dr Feldman, who is widely regarded as one of the best AMC specialists in the country, and even world. This is the first of several upcoming surgeries for Millie in the next few years, I’ll explain those below as well. 

The surgery: His plan as it stands currently (though subject to change when we arrive) is to shave off part of Millies radial head, and fuse it to the other bone in her forearm so that it does not continue to dislocate. He may also do some muscle transfers potentially if he sees the need, as kiddos with AMC often have very very low muscle mass. 

Fun fact: Millie is also missing a thumb on her right hand! 

How this affects millie: in some ways, Millie has been able to adapt as though she has no physical impairment in her arms. She can feed herself, bounce a ball, etc. But she can’t hold a pencil, catch a ball, do a cartwheel, and will need assistance dressing, among many other things. Having this surgery will allow Millie full use of her arm, and as she has very little use in her left arm (the non-dislocated one) this is critical for her.

What’s next for Mills: after this procedure, there are several more lined up for her over the next 2-3 years. Millie will likely need surgery on her left arm as well to build strength and range of motion it in. She will have her pointer finger on her right hand (that’s missing the thumb) removed and reattached into the thumb position so that she can grip a pencil, doorknob, etc. And she will also likely need Spinal rods as she has a curve in her spine that is not improving as she gets older. 

This fundraiser will assist with the medical costs, assistance with housing during our 2 week stay outpatient for intense follow-up with Dr Feldman and his providers, travel to and from Florida, groceries while we are there, and potentially a fun day trip like to the aquarium, because Millie definitely deserves to experience some good through this whole trip!

I’m always willing to help answer questions, so please never hesitate to ask!