Allissa's Fight For Orkambi
It means having to trade summertime camping, swimming and being a kid, for IV's, medicines , and hospital stays. It entails giving up much anticipated first days of school and showing off her new backpack or giggling with friends she'd missed for months.....for in-home nurses, recoveries, and 4 bedroom walls. It requires that some holidays are filled with surgeries, midnight blood draws, and pain meds, instead of christmas cookies, decorating trees, or the comforts of home and a buzzing family. Waking up to the dawn of each new day to and instead of sitting down to breakfast with her family, she chokes back around 20 pills, and does a 30 min routine with her machines, just to help her breathe. Trading 4 hours of play time per day, for 4 hours of IV meds, Instead of squeezing in a couple hours of just reading, coloring, or homework per day she instead does 3 hours of breathing treatments.
This is her fight, this is her warrior standing strong among the princess part of her life.... but something has changed, and we need your help now! (when watching, make it full screen, then minimize the actual viewing box with bottom right controls for best viewing)
Although she is an outstanding warrior, we still need your help in this next hurdle.
From this point on the rest of her the pages in her story, are greatly influenced by you.
Allissa's Mama has written a letter explaining in detail what is going on and why we need your help!
"Ok, here it goes...Some of you know what happened with Allissa this hospital stay, others don't. So I'm gonna put it all out there and then tell you all exactly what we are gonna do about it!
Allissa has Cystic Fibrosis. CF is a salt problem. Salt doesn't move in and out of the cells and this creates thick mucus. The mucus collects bacteria and infections run rampant.
This has happened to the extreme in Allissa's sinuses. She has had several sinus surgeries to eradicate the chronically infected mucus and tissues. She had the 14th sinus surgery 3 weeks before the most recent episode. She was still on strong antibiotics. CF didn't care.
She woke up on the 15th of July with pain in her face. By that night it worsened. The next morning her ENT doc decided to remove the stents he placed during surgery #14. He thought the mucus, being so thick, clung to the stents causing a blockage.
We wish it had been that simple. After surgery #15 removed the stents and cleared the filled sinus cavities, Allissa got worse. Over the weekend her pain hit 10/10, her eye swelled shut and she spiked a fever.
By Monday night she could no longer move her eye. The pressure in her head and the pain in her skull were so severe that it broke through high doses of pain medication. She was getting worse, fast.
An emergency MRI was done in the early hours of Tuesday morning. A few hours later we got the results. She was suffering from a severe infection. It had spread from the sinus cavity, into the eye socket and into the bones of her face and skull. It was bad.
Infectious disease doctors were called in. They told us to brace for months in the hospital. They explained the danger her brain was in. They made it vividly clear how severe this was. They started her on three IV antibiotics and told us to wait.
Beyond predictions, Allissa opened her eye a day later. On the second day her pain was GONE! That folks, is the power of positivity, faith and believing. Your prayers and positivity did this! Allissa had the doctors in awe!! They were amazed at how fast she bounced back.
Although she felt better, they made it clear that the infection was still kicking in the bones of her face and head. She would be able to come home (WOOHOOOOO), but she would need IV infusions for at least an additional 5 weeks.
When we complete this antibiotic run, she will repeat the MRI. We KNOW that it will be clear! We BELIEVE that she will be healed!
Now, the tricky part. During all of this, Allissa only spiked one fever the entire time that the infection took hold. Her vital signs, blood work and exams all showed no signs of the infection. The MRI saved her life.
All of this means that the antibiotics that she was on, didn't work. She is now resistant to one of the staple CF therapies. Because of this, Allissa's body read the infection as normal, it didn't fight.
This new development is scarier than the infection itself. We now have little to no way to tell if Allissa's body has an infection. With Cystic Fibrosis, the mucus in the sinus, lungs and entire body is thick like rubber cement. It harbors and breeds bacteria. This causes infection. Without a way to detect infection and with an additional resistance to several antibiotics... well, it's not good.
That brings us to plan B. If we can thin out the mucus, it will drain and therefor infection will have no place to set up camp. So, how do we thin the mucus...?
Orkambi. This is the new FDA approved Cystic Fibrosis drug. It is a genetic corrector and will tell her body how to move the salt. Basically, this will help her body to thin the mucus.
Now, here's where you come in! Orkambi is nearly $300,000 for one year. About $20,000 per month. Insurance is not covering this cost, as it is not a guarantee. However, If we can raise enough to cover one to two months, we can prove its efficacy to the insurance company and we can fight for coverage!
Allissa returns to the doctor for the prescription on the 11th of August. In the meantime, we need to organize and set up a plan of action!
I am selling Allissa's old vest therapy machine (hoping it will bring in a couple grand) to start a fundraising bank account. I would like your help in organizing a community yard sale. I need places to store donations, a large parking lot to host the sale and volunteers to help with logistics. I would also like to do a bbq cook off with music, car wash and other fun stuff. For this I need more volunteers, donations and help with logistics! For those of you that aren't local, my beautiful sister is organizing a go fund me page... ALL DONATIONS are needed and greatly appreciated!
Things are moving folks and victory is the ONLY option. Allissa WILL WIN THIS!
We need your donations, to let this princess warrior continue being the true beauty she is.
This will not stop us. We know that Allissa NEEDS this medication. Here is a brief reflection of the last 4 months of her life: 224 doses of home IVs, 29 in-hospital days, 15 port needle accesses in her chest, 6 surgical procedures, 4 doses of general anesthesia, 3 CT scans, 2 MRIs, 16 missed and 12 "left-early" days (out of 37 total) from school. Orkambi CAN change this!
Yesterday, as we were driving to yet another appointment, I asked Allissa if she felt well enough to attempt 1/2 days at school. Her reply broke my heart... "Well, I don't really know what good feels like anymore. I'm just tired or not as tired." THIS IS NOT ACCEPTABLE! No 10 year old deserves this medical purgatory and I will fight with everything we have to change this!
After breaking down and swallowing the defeating news dished up yesterday; I got my head right! It's time to FIGHT! The county of San Bernardino has the power to OVERTURN the state's decision! I plan to appeal and throw everything we've got at them! The county gave us our initial "yes" and we won't stop until it's our final "yes"!
We ask at this time that you continue to share Allissa's story. We will be sending it to local media outlets during our appeal process. Defeat is NOT an option! Please continue sending us your prayers, positivity and #AllGoodThings. We need them deeply right now.
This new "normal" for Allissa has stretched her, me and our entire family to limits that we didn't know we had. Emotionally, physically, financially and even spiritually... Every day we learn how strong and resilient we can be. #CF has not broken us. We are defining #CFstrong. We won't stop. We already know how this ends... ALLISSA WINS!