Help Brina meet other kids like her!!!!
$10 raised
0% of $2.5k goal
1 contributor
5 Years running
Brina has Rheumatoid Arthritis. She really wants to be with kids like her & the way to do that is attend the 2014 Conference. It is a 12 hr drive & 4 nights so there will be some big expenses that's why I need help to make this happen

I really want to take Brina to the 2014 Ja Conference in Keystone CO. There she will meet other children struggling with Juvenile Rheumatoid Arthritis and her father and I will get to learn as much as possible about the disease she struggles with. It is a 12 hr drive from our home in Idaho and will be expensive to attend. This is why I am asking you for help... Please read her story below and spread the word. Thank you .......

Brina was just 4 1/2 yrs od when we realized something was not right with her health. Ever since birth she had been sick over and over. Constant ear infectins resulting in surgery. High un explained fevers, so high in fact that she would vomit from the heat. She seemed to catch every single bug that was out there. When she was ill she was very ill and it would take her much longer then anyone else to kick the illness. She was developing normal besides her weight. Sitting up, standing and even walking by 9 months of age. She has always been very bright for her age and did not seem to have any developmental delays. She continued to progress and to also become ill easliy. Until one morning we noticed Brinas righ pointer finger was swollen up huge. I seemed to be just the closest joint t her nail. We monitored it and even marked the swelling thinkig maybe she had been bitten by a spider or something. However we realized the swelling was not changing for the better or the worse. We also soon discovered sh had no feeling in the finger joint that was swollen.

The next morning I phoned her primary care (PC) doctor. We were seen later that day by them and they wanted to monitor it thinking maybe she jamed the finger. Over the next 6months the PC took x-rays and splinted the finger telling us she must just keep re-injuring it. However Brinas father and I had done some research and were pretty sure this was not the case but infact that she may have arthritis. With in the next 16 weeks she had become more and more uncomfortable as ten joints became swollen. The one finger joint, the toe joints on her right foot and her right ankel. Her anle was absolutely huge and cause much pain as well as no being able to walk or be a child in any way. A little over 6 months from the first appointment with PC we asked them to please refer us to a speciaist. This with the thought that it was arthritis.  Eventually we convinced the PC to refer us to a Rhumatologist (rhuemy) for further evaluations. At this point we thought we had accepted the fact that our little girl may have arthritis (in our opinion an old persons disease)However I will be the first to admit we were not prepared for what we were about to hear. We had infact not accepted the facts as we did not understand the truth about arthritis. Our first appointment with the rhuemy was in early April of 2009. That day the specialist (Dr Knibbe) was confident that Brina in fact had a child hood disease called JRA or JIA. Juvenile Rheumatoid Arthritis or Juvenile Ideopathic Arthritis. This is arthritis but not just of on joint like most people think but infact it is an auto immune disease just like cancer. Infact as we were about to find out it is also treated with the same medicaitions as cancer. Brina had labs done that same day in April after waiting about 8 days the labs came back positive like the doctor thought however there was an addition to the diagnoses (DX) ANA + was added to the name. Thus ment that Brinas eyes were also at risk of damage from inflamation.

Over the next month we started treaments my poor little Angle was to recieve injections of Chemo therapy (Methotrexate aka MTX)every week. This hold several side effects some of which had to be corrected with other medications.Whom was to adminester these injections you may ask. No other then myself her mother. This was very hard to grasp,understand an accept. It was heartbreaking to think I was going to have to inject my child with poisen in hopes that it would improve her life. The first few injections I could not bring myself to do. Brina grandmother was a God send for this she was more the qualified and willing to do them for me. (not to say it was easy for her either) Brina did her best to understandthat we had to do this no matter how hard i was. We did not want to hurt her and infact we were wanting and trying to help her feel better. But no child likes shots or can possibly understand why on earth there mother and grandmother would want to give them shots every week.We returned to Dr Knibbe the following month they once again did blood work as they would every 4 weeks from then on. The doctor also wanted to add steroids(Prednisone) to brinas dailey medicaitions given by mouth. Steroids have many side effects including mood swings, moon face(swelling of the face) weakness,depression,as well as many others. we tried the steroids and came back to the doctor the following month(June). The swelling had not improved at all this is when we were confronted with the option to inject atleast the ankl joint with steroids directly. We wanted to research and sleep on the thought befor decidingwhat to do. We eventually decided to proceed as the doctor thought nesecary. Brina would soon go in for the injection. She did much better then we thought as she was awake for the procedure. She onlyonce said ouch. The doc used a huge needle to go threw the skin and tissues into the joint intself. He did this on both sides of the right ankel. For about four days after she was not to attempted to use the ankle at all. this ment laying aroud not enjoying her child hood as she was forced to do for almost a year already. We carried her every where to the restroom when needed then back to bed etc.

The ankle eventually reduced in swelling to a some what normal size. Little did we know we were not done having issues with this joint.

The MTX and steroids seemed to be working to hold this monster at bay. Yet once again we were not ready for the next thing to come our war. about 14 months after DX Brina stopped responding to the medications. Her labs were out of wack yet again and she was having inflamation again as well. This in the RA world is known as failing a medication..The MTX was causing days on end of nausia and vomiting as well as hair loss and days and days of the Chemo blues(just not feeling well in any way) as well as weight loss issues. We were once again goin to be put in the spot of discision maker for Brina. Our choices could and would effect the rest of her life. Our next choice was to start a new medication along with the prior ones. The new medication to add to the list was Enbrel. Its a Biologic medication. It was also an injection. Brina was now taking several oral meds a day as well as a injection of MTX weekly and now enbrel bi weekly. Brina was soon refered to a Gastrointrologist for sevear stomach pain. She had lbs done and those took about 1 month to complete due to genetic testing being done as well. These results showed Crohns disease. she soon had a surgery done to take biopsys of her intestines. These werethe final piece to the puzzle of her second diagnosis of Crohns disease. Which is another auto immune disease that involves inflamation but no of the joints instead its of the intestines and bowls. However Enbrel seemed to be helping her fee better over all. Once again our hopes were high and then shot down when yet again she failed the medication or should i say it failed her. The next option placed befor us was another bioagic called Humira. This was also an injection but would take the place of Enbrel. It would also be givenby injections once monthly. This injection was much more painful though. Brina was used to the needles,blood draws, and pokes from injections at this point, but this new medication was a different story. She would beg and plead with me to not give it to her. She would then kick and scream trying to avoid it. Once the needel was in she would just cry and scream fast faster be done mommy be done. This broke my heart each and every time. Did I mention we were still going to the Rheumy often and had to drive almost 200 miles to see him every visit. Eventually it was to the point she would actually make me feel so bad about it that I would postpone it a day hear and a day there. In July 2011 we were injoying our 4th of July and watching fire works at the local college. On our way home we were in a horrible car accident in which my son was badley injured.Brina stayed with family while we drove to Boise to be with our son. She did not get her injection that week due to me being absent. Now my attention had to be on both of them 24/7. This was too much for me to keep track of and Brina started missing an injection of MTX here and there. I eventually admited to the Rheumy that she had basicly been off of the MTX. He was fine with this as she had continued to do well. So now the only injection was Humira. Doctor appointments continued and so did the shot. In April 2012 she flaired yet again and the Rheumy wanted to add MTX back into our treament. I refused to given the side effects she had already lived with for way too long. He insisted and again I refused. I requested a second opinion at this point because I was not going to put her threw that God offel drug again. The second opinion would come from even further away in Utah, but for my baby girl I was more then willing to pay more and travel further. In May of 2012 we would travel to Pimary Childrens Hospital in Salt lake city Utah. We loved the doctor and she agreed that MTX wa NOT theway to go. Instead she sugested Orencia this would not be an injection but instead an infusion. Brina would be hooked up to an Iv and have the medications pumped into her little body. This doctor was amaizing she left discion up to m but made sure I understood my options well. I agreed that we woul try the orencia infusions. 2 weeks later we traveld to Utah and did her first treatment. Every 2 weeks for the next two months we returned to Utah and spent the day in the hospital getting her treatment. She seemed to be responding very well. Now we are getting these maitenece treatments once a month. She loves these treatments inplace of the paiful humira injections. She also loves her doctor, the childrens hospital and her very own infusion nurse. We had our most recent appointment with th Utah doctor on the 25th of October. She wants to up her dose of orencia a little this next month. She also diagnosed some permanent damage of the right pointer finger (original swelling spot) caused by th swelling aka inflamation. This damage is called boney over growth. the finger will for ever be deformed and have limited mobility. She also realized permanent damage of the right ankle caused by inflamation and also by the steroid injection we had done. It was not done well and leaked out of the joint eating away the fat cells over the joint. She also has some mobility restrictions of the ankle. The doctor wants us to start Physical Therapy(PT) to try and help wih mobility. Brina was also under weight so we started Pediasure shakes 3 times daily to try and pack on the pounds. Brina was complaining of hip pain so we did xrays of the hips wich seemed to be clear of damage however there was a surprise hidding in the xray. Brina has a Lumber that it fused to her spinal column. This is of no consern at this time thank goodness. So at this time we will continue to see the doctors regularly and do monthly infusion treaments. I was homeschooling Brina do to her illnesses however she is attending public school for a semester to see how it goes. We will soon start the Pt and we are praying it helps her be able to injoy her childhood a little more.

With that said I will close this story for now by saying I am very proud of my BUG and I love her very much. She is my hero and I will forever try and improve her daily life. I am also for ever in debt to her for all she has been threw and no matter how mean it seems i am being I am doing what I need to, t keep her as comfortable and normal as I can.

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