This is Kailalynn

Most of you know our story with Kailalynn, but for those of you that are new, welcome. Kailalynn was born at 40 weeks a perfect 7 pound baby. At Kaila’s two week check up we noticed that her Umbilical site was still bleeding, they took blood, and said that her hemoglobin numbers were off. We went up to Portland and did more testing where they did indeed see that something wasn’t right but they couldn’t quite figure out what. We then went back to Boise and started with a hematologist here. After six months of testing and not being able to tell what it was but knowing that something was off, we were referred to a hematologist in Colorado. Dr. Dipalo was able to diagnose Kaila with von Willebrand’s disease at the age of eight months. So life went on, as we learned to live around this disease we thought OK this is a little hard but nothing we can’t handle. Fast forward to Christmas, at this time she is 13 months old and we notice she starts turning yellow, we just keep an eye on it until we are headed home from Oregon and she starts projectile vomiting and acting extremely lethargic. We take her to the ER in Bend where they tell us we need to get home to Boise and have her seen immediately. We drive home that next day and go straight to her dr. on base, he then comes into the room in a panic saying we need to transfer you to Boise immediately, confused on what’s happening we ask why is she yellow what is going on. He says her numbers are those of liver failure and she needs to be seen at the Boise pediatrics unit. This starts a 10 day journey inside the hospital and a rush against time to try and figure out why her liver is failing before we have to go get a liver transplant. On day nine we are defeated wondering why it is just getting worse and worse, no tests are coming back good, no one knows what’s happening and finally with the help of an angel doctor, Dr. Thompson, he comes running in saying I found it I found it I found it. He did a test that he didn’t know would be it because it’s rare to be diagnosed under the age of two and even more rare to be diagnosed under the age of two as a girl but indeed she had it, type two auto immune hepatitis. She was then taken back for an immediate liver biopsy where they confirmed that is what she had started on steroids for the next six months and then transferred to A chemotherapy agent medication that will keep her immune system almost nonexistent so that she can stay alive. She will have this disease for the rest of her life, there is no cure. Again we start to learn to navigate our lives around this new disease. We start the journey of learning how to keep her stable, while still allowing her to be a kid, keeping her safe, while still allowing her to explore the world. Over the next year we have ups and downs, Home time and lots of hospitalizations but we finally kind of get a handle on it. While dealing with this new disease we discover she is having small bleeds in her muscles in her knees causing her not to be able to have very much range of mobility. So we start physical therapy, in hopes to help build her muscles because they are deteriorating due to all of her medication and hospital time. We start seeing a rheumatologist for her knee pain who decides she does not have juvenile arthritis but he thinks she may have neuropathy. So he refers us to a neurologist, after many test the neurologist thinks she may have chronic migraines. This would be due to medication, pain, and overall just her body. So again we continue on our journey, she is three now and has rashes constantly, not small little bumpy rashes but huge rash is covering her entire body causing her fevers causing her pain causing her itching. So next we get referred to an allergist. Who does a standard allergy test and says nothing showed up. But I do want to test her for autoimmune urticaria Which is extremely rare autoimmune disease and he doesn’t feel she will have it but just in case he’s testing for it. Lo and behold two weeks later he calls confirming, now we start the process of this disease, learning to live with it learning to medicate it and learning all it means. During this process she is now in rolled in PT once a week, and we’re working very hard to try and manage her pain in the most natural way. Yoga has been a huge lifesaver, just a sidenote Lol fast forward Kaila is now four, almost 5, we have had good days we have had terrible days, we have had good months and we have had bad months. This summer has probably been her best pain managed summer we have had so far. That being said with Kaila it is always a waiting game, when is the next flareup? When will the next time be she stays up all night screaming in pain. The rheumatologist called me last week and let us know that there is a genetic test that can possibly give us some insight. It’s not guaranteed as she may just have random rare autoimmune and other diseases. But there is a possibility that all of these diseases come from A single genetic mutation. If we were to find that out we could know if we’re giving her the right medication, maybe find a medication that is less harsh, overall we would have more knowledge about her diseases no matter which way the test goes. It could be extremely beneficial for long term, and knowing if there is a higher possibility of more Auto immune disease developing in her or if it will just be a random thing that may or may not happen. We’ve been told ever since the first autoimmune diagnosis that Kaila has a large chance of getting more, but the way she has gotten more so quickly over the last for almost 5 years is very concerning. It would be awesome if we could know if these are all random or if there is a set reason for these and how high the possibilities are of her developing more, so we could be on a higher look out before she ends up in the hospital where she is diagnosed there. So this genetic testing is extremely exciting for a family, only because the more we know about Kaila‘s diseases the more we can due to better her life and the more we can normalize her life for her. We have tricare as most of you know her father is active duty military. But tri-care does not cover any of this genetic testing, so this will all be out of pocket. But we have gone back-and-forth on if it is worth it and for us we feel it 100% is. How can we not give this child who has fought tooth and nail since the day she was born, possibly more answers to her sicknesses. So we are asking our friends and family and everyone who has followed our story and loved our story to consider donating towards this genetic testing. It’ll be somewhere between $2000. Anything we raise over that will be used in case it ends up being more, past medical bills that weren’t covered by tri-care, gas to get to and from Kaila‘s appointments that are always happening, food for appointment days, and other expenses related to this. Even if you can’t help just the prayers and knowing how much you guys have always supported and loved our family means the world to us. Here’s to hoping we get some awesome insight through this test.