Help Freya's Family Through This Medical Crisis

This is a very vulnerable post that I genuinely did not want to have to make. I’ve been going back and forth about posting it for days because to be quite honest I’m embarrassed, but we are at a point where I have no choice but to ask for help publicly. We have been in the hospital with our youngest daughter Freya, who is 4 months old. We were here for about 3 weeks, then was discharged and in less than a week we have returned and have been admitted for about another week now and there’s no end in sight.

Freya has a very rare histio-cytic disorder called Juvenilexanthogranulomotosis. Otherwise known as JXG. One per million in children, there’s no known cause for this disorder. This causes skin nodules/masses on the head, neck and trunk of the body. The nodules are a result of an overproduction of a type of histiocyte cell. These nodules can also form in the eye or cells can cluster in the eye causing inflammation. Which is Freya’s case. With years time the nodules will go away. As for her eye, the nodules would have continued to grow if we didn’t intervene with a MEK inhibitor and surgery. She has had one surgery to help build a new drainage system in her eye since hers has so much scar tissue and nodules blocking it. She will also have to have several revision surgeries. It’s important they watch her closely which is why she will be here for a while, due to her having damage to her optic nerve and also stretches on her cornea and lens from her eye stretching due to the high pressure. Everytime we think she’s better, things seem to take a turn.

Tomorrow (Monday, August 12th) she’s going to need revision surgery and we will have to stay for several weeks or more to make sure her ocular pressure maintains a good steady pressure, since we don’t have a pediatric ophthalmologist in our state willing to check her pressures and check for bleeding, while making sure her stent is still in place with no complications after we are discharged.

The last few days have been very hard for us, as we have learned we will not be able to attend Kaydens (our oldest of 3) first ever school orientation and his first day of Pre K. We also have yet to even go school shopping for Kayden, because we have been out of work. I also will be having to give up on going to nursing school this year and having to wait until next year. Due to all of her upcoming appointments going back and forth to Cincinnati, and with her also being on a chemo drug making her immune system suppressed severely, it wouldn’t be wise for me to continue with school this year.

As far as our hospital stay goes, we are on a waiting list for the Ronald McDonald House but we have no idea when a room will come available to us.

Unfortunately Jesse (my husband) and I have been out of work for a long time, and as we are blessed enough to have great support from back home, they can only do so much.

We are asking if you are able to, or want to, we would appreciate any donations that can help us get food, help with medical bills for later in the future when we get home, and other things that we aren’t able to maintain right now so far away from home.

We appreciate anything and if you’re unable to donate we completely understand and only ask that you pray for our girl and our family through this very difficult time.

We are very grateful for all the support we have received and can’t thank everyone enough.