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"!

Tuesday, May 17, 2011

UPDATE: Cells are Back in the Right Eye !!!!!!!

Not a good day! Had to skip the Remicade Infusion last Wed due to a light cough & red throat (although Bailey didnt complain at all or seem sick),... SO due to go today but had eyes checked yesterday first...... Good thing we did. Cells in the right eye are Plus2/Plus3 (Ratings for amount of cells....). SO,.... Back on the PredForte Steroid Eye Drops EVERY HOUR (16 a day) and the Dilating Drops 4 times a day as well. Cough has gotten a little worse this week, but not bad like when she has had a cold or sinus infection, etc,.... Strange! BUT, cant take a chance with the Remicade suppressing her immune system more now,... so Waiting to hear from the Dr in Tuscaloosa to tell us to come down or wait another week...... In the Past EYES were flarring after Remicades were stretched out to 8 weeks,.... this time its only been 5 weeks. Been sick on my stomach since yesterday,.... is this where it gets tougher for her...... I HOPE NOT!!!!!! We have felt blessed because we hear of so many Horry stories of Kids all around the states that seem worse & have phnuemonia several times,... surgeries,.... But Now am wondering - Is this Our time???? Praying that its Not!!!!!!

Tornado damage, Tuscaloosa Treatment & Donation Spls for Storm Victims

So,.... after seeing the destruction in Tuscaloosa today, I was driving in traffic & saying, "Lord, what can we do,... what do You want us to do?" And I came upon a Nat Guard station handing out Tarps,... I pulled in to see if they were giving them to diferent city's, or just there,... I told them where we were from & how the church is helping others,... They said, "Pull up, we'll get you 5!" So great,,.... then they asked what else we needed for Victims..... I mentioned Flashlights, underwear, etc,... They gave me a paper & address & said go there. I found it & as they guided us through, it seemed like more of a "Each person just gets 1 of what THEY need type thing,... I told them nevermind, we didnt want to take from the victims there,.... They said NO. We see you're trying to help other victims & - Just park over there!,... SO, Bailey was kinda droggy still from treatment, but we did & lady met us, told her where we were from & what our community needed to help others,... She loaded us up with Underwear, Flashlights, batteries, gloves, Bug Sprays, Shampoos, Soaps, toothbrushes, toothpastes,,...... We made several trips to the van & didnt think she was ever gonna stop! LOL! What a blessing!!!! She said, "Well, we havent had many people here & the ones who dont have cars to come cant get it either & thats why she was happy to hear how Christway Church has been going OUT to the Victims to help! Otherwise, they can't get what they need & all these supplies stay in a warehouse! Which they don't want! SO,.... Big delivery to Christway coming! LOL! OH,.... the sweetest thing is, the lady gave Bailey a New Barbie doll also while we were there! I had been explaining to Bailey lately of how God has Blessed us with so much & our home wasnt destroyed like many others, so we needed to give back & help however we could so we could be a blessing to others...... Well, just a minute ago she was going to bed (yea 2:25 AM!) and she got her doll & said "I'm so glad I got a Blessing today too". LOL! After her day - She deserved it! What a trooper!

Wednesday, May 4, 2011

The Bad & the Good,.... Tornado destroys / Dance Restores

On the way home from Mobile (meeting Kristy), the Storm/Tornado ripped through our City & surrounding others. Our friends & family are dealing with loss & cleanup, but we are blessed in that our home was fine. We lost power for a few days & food in the Refrig & freezer,... but Nothing in compare to what others here have lost, including lives. But in this horrible loss, Bailey still had a ray of sunshine,... her 1st Dance Recital! She has been able to attend dance class at the Childrens Dance Foundation this past year & has loved it! It is a true JOY for her to go to Ms Mary's Class every Wednesday!!!! This keeps her Body moving & we like that! This Auto-Immune form of Arthritis & Uveitis may slow her down,... but it doesnt keep her from Dance! Her first Recital this past week was such fun for her,... and us!
We will be driving, about an hour, into another Tornado Destructon Zone (Tuscaloosa, AL), tomorrow, to begin her Treatments there. Please keep all of these storm victims in your prayers!

Kristy McPherson & Arthritis National Research Found. Fighting for kids with Juv Idiopathic Arthritis!

Thank you ANRF,Kristy and ALL who were involved in making this a Great day for Bailey& Helping to raise awareness for this horrible disease! More Pics & info to come!!!!