Sage's War Against Cystic Fibrosis
Organized by: Kim Kay
Kim Kay via Crowdrise
January 17, 2016
EVENT DATE Oct 03, 2015
As many of you know Sage continues to have difficulties since I started this campaign nearly three months ago. Sage continues to be on oral antibiotics that wreak havoc on his system. The medications are very taxing on his liver, not to mention on his increasing levels of anxiety. He does get to do some normal kid stuff, like spend the night at a freinds or play basketball. However, he is scared of throwing up, and not being able to complete things. No kid should have to go through this. The kicker is, is that the family is seriously looking at having to take a trip to Denver, CO to a specialist hospital so that Sage can get some help. Sage is allergic to almost everything, which makes him very difficult to treat. He is now having to endure these allergies in order to get rid of a bad CF bug. A trip to Denver is extremely expensive. They will have to pay for the plane tickets, lodging, food, etc out of pocket. They stuggle financially, and a trip like this seems almost impossible, yet they are put in a situation where they have to do it if Sage's health dictates that. On top of all this, the carpets in thier home need to be replaced. They have NO MONEY. The carpets, with the state they are in right now are hazardous to Sage's health. They must put in flooring in the three bedrooms which can be sanitized. Any little bit helps. Almsgiving to those in need is something that is dear to my heart, and I invite all of you to participate and give what you can. God Bless.
Sage had his appointment at UNC and they came up with a new plan. So he will continue with his antibiotics, only he will take them daily instead of every other day. He was also switched to a liquid antibiotic. Sage is skeptical as this has made him sick before. If this doesn't work the family is looking at possible outpatient trips to Denver for a weekend stay every six months. With the new year coming up, there will also be co pays again for his medications. The doc said to start saving for the trip. Sage is going to give it a week and see what happens. The family is also trying to raise money for Sage to start a non profit organization to help other kids with CF. Please consider helping this family out!!
Sage has had a rough week...3 trips to the ER (antibiotic related), but he is ok and smiling big, as always. A local rescue center, Paws Place, had a dog that was in pain from arthritis. Sage HAD to help this dog, so he decided to foster John Boy to help him feel better. Sage fostered John Boy.....But I think John Boy saved Sage this week!!
The family has now raised enough for Sage's drum set! Thank you all so much who donated! We still need to help them cover all the medical costs that are rapidly piling up! They get NO government assistance or help whatsoever, despite Sage's expensive care. Sage has a heart of gold and this family gives back at every opportunity. Please help us take off some of this huge financial burden they carry. Thank you all for your prayers, thoughts, and love!!
8/26/15 UPDATE: First of all thank you all very much for supporting this fundraiser! It has been able to give the family a little breathing room. Sage is halfway through his first medication. He takes it three times a week. During these days he's extremely sick, to the point where he is nauseaus and doesn't want to get up. Unfortunately this week, the family has had so many unexpected expenses, that has depleted them once again. The family is still needing some support, so if you can please support them!
8/5/15 Update: Sage is home and after a crazy first day, Danielle is exhausted but things seem to be calming down. The antibiotic delivery system they sent him home with did not work for Sage because the pressure of the antibiotic ball delievered at a pressure that wasn't compatible with his blood pressure at his PICC line. So, what does this mean. The meds were useless. They had to go to the ER for his antibiotics thier first night home and really early the next morning. Sage seems to be tolerating the medication, for now, which is a good thing. I don't think it means that he will continue to tolerate it, so that's what we're hoping and praying for! Home is still better than the hospital. After so many days in the hospital we tend to get what I call "hospitalitis" you sort of lose all track of time. Everything sort of meshes together, the food all tastes the same, and on and on. It's absolutely exhausting. Home is much much better!! Keep praying for Sage and his family!!
7/29/15. Update: Sage is on his way to UNC for IV antibiotics. This is due to the allergic reaction he had to the oral antibiotic. They still don't have the sensitivities back to treat the MAC. Danielle says it will take another week to two weeks to get those. We are hoping he doesn't have a reaction to this medicine, like he's had to so many. Thankfully, he won't have to be admitted to the ICU. Now we wait, again, and hope this medicine will work for him.
7/24/15. Update: Sage is on the way to the local emergency room. This last week or so he's been having severe nausea and migraines. As you know, Sage is a pretty tough cookie, and he actually asked to go to clinic and get IVs. This never happens. He has also started getting a rash, so the doc said go straight to the ER instead of making the trip to UNC. She thinks he may have yet another allergic reaction to another antibiotic. Please keep praying for Sage and his family and I'll update as I get information. Oh and continue to share!
Update: Sage had his appointment at UNC yesterday. Started off with good news! The AFB is MAC instead of abcessus, so it's the better scenario of the two. However, it's still not good. The treatment will be long and hard, but there is a better chance that he isn't allergic to the antibiotics. His PFT's were lower, but not significant. Most likely due to Sage staying active with running. Getting a drumset up and running will help with this too. He also had a CT scan of his lungs to assess the damage from the AFB. The results should be back on Monday or Tuesday. Sage will be starting on Bactrim for a month, and then doxycycline, to kill the other bugs. They are waiting to treat the AFB MAC because they want to retest again so they can make sure the antibiotics will work. The treatment for this lasts for years and can be like chemotherapy. It can damage his liver so he'll have to have blood tests for that, and it can cause blindness so he'll have to be vision tested monthy. This will not be a fun. It's scary, but they want to make absolutely sure the antibiotics will work, before they begin to tax his liver and hurt his vision. So...the bottom line is, more waiting. We've had a great response so far with this fundraiser but have a ways to go! Please continue to share and pray for Sage and his family!!
Update: Sage and Danielle are headed to UNC today so he can make his early morning appointment tomorrow. He has a surgery follow up, from having his gallbladder removed, PFT's, Full CF Clinic, and x rays to see what damage the AFB has done to his lungs. They want to get a baseline on everything so it will be easier to determine if he's beating this awful bacteria. I'll continue to post as more information is learned. Please keep sharing and we'll all do what we can to help them out.
Sage Louviere is 10 years old and suffers from Cystic Fibrosis. Sage could be described as your normal 10 year old boy, but he is not. He is more than that. He is an amazing little brother, a gift of a son, and a loyal and caring friend. He is a master video game player, and a drum prodigy. But he is also a warrior against cystic fibrosis (CF). 3-1/2 years ago it was discovered that Sage had a life threatening AFB infection. AFB stands for Acid Fast Bacillia. there are 2 types of AFB. Sage was diagnosed with the Mycobacterium Abscessus version. He spent months in the hospital, and beat the infection. Though not before becoming allergic to all of the antibiotics that treat it. As a side affect of the treatment, he got Dress Syndrome, and his liver and kidneys began to shut down. He was pulled off of the treatments to prevent further damage to his body. Unfortunately his liver was severely scarred, but luckily he had enough of the medicine to kill the infection. On July 9, 2015, his parents were notified by UNC Children’s Hospital in Chapel Hill, NC that Sage has tested positive for a new AFB infection, 3-1/2 years after he beat the last one. Knowing the hurdles his body faced, and the extreme difficulty of irradiating this bacteria in a cystic fibrosis patient, we are hoping for the best, but planning for a very extended stay in UNC Children’s Hospital, or an at home antibiotics regimine that could last 1-2 years. This includes having to administer the medications, possibly in the ICU, at an extremely slow rate, so his body can be desensitized to the antibiotics he's allergic too. This account was started on behalf of his parents by people who love Sage to assist in 3 factors related to him: 1: Provide funds to start a medical non-profit organization allowing Sage to fight CF for himself and for others long term. $600.00 2. Sage is a drummer, a very good drummer. He has beaten his current drum kit to pieces and it is the constant normal thing in his life that keeps him grounded. Unfortunately with medical expenses and travel associated with his treatments, his parents can no longer afford a new instrument. The act of drumming and aerobics associated with drumming are a great therapy for his lungs. Some Funds generated through This account will also purchase a new digital drum kit for sage. $1,100.00 3. As with any chronic genetic illness, medical bills are a way of life for parents. Not only do they worried about their child, but have to deal with the weight of outrageous medical expenses that are generated in the process to care for them. Most of the Funds will assist in medical expenses, travel, and medications needed for his additional treatments and nutritional needs. Sage has the fight of his life in front of him, but you would never know it by Sage's attitude. Sage continues to be an inspiration to those around him, never complaining about the pain, or things he doesn’t get to do due to CF. He always posts encouraging videos and even at his young age has assisted the CF Foundation as a spokesperson. Please help Sage continue his war against cystic fibrosis, and his goal of becoming not just the best drummer in the world with CF, but the best drummer ever! Thank you for your thoughts, prayers and support.