There is Still - "NO CURE",... for "JUVENILE AUTO-IMMUNE ARTHRITIS" (Also known under many types such as,... Juvenile Idiopathic Arthritis, Systemic, Lupus, Psoriatic Arthritis, etc..... ) and with some types/children, the disease not only attacks their Joints, Bones, Muscles, Kidneys, Hearts, Lungs, etc,.... it also attacks their EYES as well,....known as "Uveitis". There are currently, Only Medicines to help "Slow" the joint damage, growth problems, sight problems, including blindness, skin, scalp & nail disorders, fatigue, pain, and emotional problems, including how they can seem-look "normal",... and people not knowing how they are suffering from this horrible disease. We need to find a cure!
Thank you to Everyone who helps raise awareness for Bailey & the 300,000 children,... "living" with any type of this horrible auto immune disease. These children didn't ask for this life that they were given,.... They just have to live it, - the best they can - With our help - And with God's Hand.
We SO MUCH appreciate the Doctors, (Pediatricians, Ped. Rheumatologists, Eye Specialist, etc...) Nurses, Dentists, Theapists, Lakeshore Staff who help keep her moving, and all.. who help with JIA & Uveitis!

Two of the Medicines Bailey has been on for 6 years now is Methotrexate (Chemotherapy drug-used at a smaller dose than cancer patients) We have to give her an injection of this medicine each week at home. Also, her Remicade IV Treatments are a Biologic Medicine made with a mouse protein and are extremely expensive. (The latest insurance EOB is billed at over $15,000.00 Each Treatment!!!) --No wonder Insurance Companies are trying to make these kids people try Cheaper drugs first,... Dangerously letting their disease Progress!!!!) So even WITH Blue Cross, or other expensive health insurance, this leaves a huge burden for families.
AND - of course, the Organiations who work "Daily" to "Raise Awareness, Funds and Research" to help find treatments, better medicines,... and strive for a CURE! Such as "The Arthritis National Research Foundation" in Long Beach CA, "The Arthritis Foundation", The EYE/UVEITIS Research Groups, The Many Many Various groups and people who help ad have helped spread the word & Baileys Video & Message, to raise awareness,.... and Of COURSE - The SPONSORS & SUPPORTERS of Juv Arth Research!!!! You may think your voice is small,.... but it is HUGE to families like us! Thank you for Speaking Out & Speaking Up!

NOW: The "Must See Video" & Other Videos & Links are below to the right, under "VIDEOS & Links"!

Wednesday, March 5, 2014

We'll it's been a LING time since last post, I know.... But we be had a lot going on!  Will try to detail and upload pics later..,. For now she is back at Lakeshore Foundation for warm water therapy... Very moody, had to stop the $15000. Remicade treatments because of no more assistance- started Humira (which burns, she screams " mommy no please, take it out it hurts!!!"  I can't stand much more!) eyes are in another flare since stopping Remicade!!!! So she's back on predforte steroid drops every hour-16 times a day... And dilating drops to keep her pupil wide open 24 hrs a day to prevent. Any scar tissue from forming etc..... She is a little nearsighted in one eye right now ...  She isn't very happy, seems so down each day... Back to therapy to Children's Lighthouse next week! One minute she's fine... The next she's off crying or screaming about something little.... She also started Aa new pill this week to help with inflammation and pain... First time taking pills and they're pretty big do u can imagine how that's going!!!  She had to have dental surgery at Children's Hosp (with lil brother)... Medicine/chemo methotrexate eating Way at teeth, do 4 back had to be pulled and spacers put in...  Wow... So much more, just no time!!!!!

No comments: