Journey of the Amazing Roz
Dear Loyal readers,
I need your help. I need an all out social media blast to help put some pressure on Anthem Insurance to allow little Roz (Journey of the Amazing Roz) to have the surgery she needs. Please take the time to read the letter by Anne, her mother, below and hop over to facebook to read more. She is just a wee bit younger than Lil’ Red so this hits very close to my heart. We are in the same homeschool support group. I met her mom 1 1/2 yrs. ago and am amazed at all this family has had to deal with.
My goal is for 10,000 likes by Monday January 27, 2014. (I know this family personally and can vouch for validity. Thanks, Thaleia)
Here’s what Roz’s mom has to say:
Our 3.5 year old daughter, Rozlyn, has Complex Partial and Intractable Partial and Localized Related Epilepsy and has been through multiple tests, scans, VEEG, EEGs and we have found a focal point to her seizures at Cincinnati Children’s Hospital (4th in the nation for neurology and epilepsy treatment). She has been on 5 different seizure meds and none have helped. After a panel of specialty neurologists, surgeons and epileptologist conferenced over her week of diagnostic testing, they concluded unanimously that she is a great candidate for brain resectioning surgery to remove the section that is causing the seizures. We were so excited and blessed that she would have a normal healthy life after her surgery. We have waited over 3 months for her to be reviewed and accepted as a candidate.
Well here we are 1.5 weeks away from her surgery date of February 5th and we have just found out her surgery has been denied by insurance (Anthem BCBS). They claim it is an experimental surgery. How can it be experimental if it has been around for years all over the world? My doctors have sent them all their findings, notes, scans and still being denied. They are going to send personal letters to Anthem to try and change their minds. My husband has worked 10 years and paid into the same insurance and have dealt with the increasing cost monthly and major jump in deductibles and out-of-pocket costs. We were ok with that because we knew we would one day need it.
So now our normal little girl will have to continue to suffer through her multiple seizures a day. We will get to watch her slip away as her seizures start to create delays in a normal, intelligent little girl. We will have to watch a once hyper, spunky, happy little girl sleep all day after her seizures and be sad and tell us her eyes and head hurt. We will have to watch her vision increasingly begin to deteriorate due to the seizure focus being in her right back occipital lobe. She has already lost her left eye peripheral vision. We will have to worry about SUDEP and pray that doesn’t happen to her. All because insurance now says no. They have accepted everything up until now, all the testing, all the scans, inpatient VEEG, medications, appointments. SO why now, when we are so close to having a normal life for our daughter, are we being punished? Why is it ok for Anthem’s doctors to tell us we can’t give our daughter the medical procedure she needs to not have seizures?
Something needs to be done. My daughter does not deserve this. Should my husband quit his job and get the medical card so we can have her covered for the surgery. It seems the medical card gets you everything. If something happens to my daughter, I will sue Anthem because ultimately, they will be the cause of anything else happening to her. If it was me, I would be mad but deal with it as an adult. But she is a little girl. She can’t help it. She is innocent.
Please get the word out so HER story is heard. We don’t want anything accept an acceptance for the surgery. She is our little Wonder Woman and only want what she deserves. Please go to her facebook page and read more about our little Amazing Roz. Word of Mouth is a powerful tool and hopefully someone who can help hears our story.
Thank you for your time,
Anne H. Abbott
Please read, comment, tweet, like on facebook, and share on facebook. We are on an all out media blast to get Roz’s story out all over in a very big way.
Here’s a couple suggested tweets:
Insurance company refuses surgery for #epileptic little girl #specialneeds http://on.fb.me/1iyuWm8 #amazingRoz PLS RT
#advocate Epilepsy surgery could save ROZ but insurance deny’ s the surgery. http://on.fb.me/1jwphgC #amazingRoz PLS RT
Thanks so much for sharing our story. We are blessed with such amazing friends helping us raise awareness of this major issue.
So glad I could help. I know that every little bit helps!
linda spangler says
Please let me say how sorry I am that you and your little girl are going through this ordeal. I don’t want to second guess your choice to go to Cincinnati hosp. and I know they have a very good reputation, but have you considered taking her to St. Judes where no one has to pay for the care they receive? My husband and I have made a monthly donation to St. Judes for years because we know the money will be used to help the children with serious illnesses such as your little one. I pray the insurance company will decide soon that the price to save an innocent child’s life is worth more than another bonus for it’s CEO’s. God bless your family.
Angela Rank says
I hope and pray that she is able to get that surgery!!! I know how excited you were! How DARE them!!!
We will do the surgery at Cincinnati either way. They have been there the whole way and we trust in them completely. We will hold fundraisers IF we have to. I know St. Judes is wonderful be we are on our last stage of this journey and don’t want to start back at the beginning with new drs.
Update: Anthem is reviewing the letrers and everything today. Hopefully we hear something tomorrow. Nextvstep is for Doctors to call personally. She is on an Ativan bridge to slow her recent seizure increase in hopes surgery stays on schedule. If not we will changng her one mwd again to a stronger anti epileptic drug. Not wanting this.
Oh my gosh, I am so sorry that your family is dealing with this. Sending virtual hugs to you all.
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