During the last 8 months I have become close friends with a wonderful woman named Maria, I have also come to love her daughter Jaylin (JJ). JJ has stage 4 neuroblastoma, a terrible pediatric cancer which requires chemotherapy, surgery, radiation therapy and stem cell transplantation. Low risk neuroblastoma has a high rate of success, sadly this is not the case with stage 4. JJ has undergone 8 months of hell, there really isnt any other way to put it, her treatment and side effects have been quite heartbreaking. But JJ has been so brave, even when in great pain she sings and smiles, she loves princesses and is usually dressed in the most beautiful princess dress you could ever imagine. She has had extremely invasive surgery yet astounded her doctors and recovered in no time at all. JJ is a gorgeous little 3 year old girl, full of life and potential but JJ desperately needs one other drug, 3F8. 3F8 is a mouse derived antibody and has shown great promise, 3F8 could well save JJ's life. I am probably making a complete arse of explaining this, so please read more on 3F8 here ...
http://www.mskcc.org/mskcc/html/3215.cfmAs far as I understand it though, this therapy is still experimental (but very succesful!) and guess what, due to this factor, her insurance company wont pay. I know that Maria has been fighting and pleading with them for weeks now and still they wont budge. Maria and JJ cant wait any longer, JJ needs this treatment within the next few weeks. The oncologists at St Joes and at Sloan Kettering in New York have recommended 4 cycles, each cycle costs 18 thousand dollars! I am not asking for donations, this isnt a begging letter, I promise. But please think of this little girl and her mother, and if anyone reading this knows of anywhere, anyone or anywhere at all, we can plea to for funding then please let me know.
I can be contacted at
greasylake@hotmail.com and will pass on all correspondence to Maria.
5 comments:
I will look into this and rack my brain to see if there is anything I can do to help. What a sweet little girl. JJ and her family will be in my thoughts and prayers.
I'm thinking of each of you too! Take care. Sending Smiles, Angel Laura
Stephanie,
It really is quite heartbreaking to read about JJ's situation and know some bigwig in an insurance company has the power to say yes or no, and chooses to say no to the treatment she needs. It makes me want to walk her into their head office and sit her on his lap and ask if he wants her to die. I think Security may be called quite quickly.
The only thing I can suggest is that you try to get the media involved. It probably won't shame the insurance company into changing their mind - they're too heartless. But it may start the ball rolling with some large donations which, let's face it, is what's needed. Didn't your friend Anissa recently have dealings with a TV company? Perhaps they could start things off and 'from little acorns' etc. Come to think of it, maybe they could film JJ walking into the insurance company. I wonder how they'd like the negative publicity! Maybe I'm being heartless now but, quite frankly, I don't care. I'm too flaming angry with them.
Think Anthony Nolan and what can be acheived with some nationwide coverage. There's probably other examples in the States that I'm not aware of. It may just be possible and is surely worth trying for JJ's sake and the other kids in her position. And with friends like you helping anything's possible.
By the way, does anyone have any contacts with some celebrities you could get on board with some support? Think big (it can't do any harm!) cos it obviously needs to move quite fast.
I wish you all the luck in the world. We'll be away next week (half term holidays) but will check in later.
Love to you all, Dawn.
Steph,
I've just read this back and realised what I'm suggesting and the work that may be involved. As if you haven't got enough on your hands at the moment!! Know any friends or organisations locally that may take it on for you?
Like Dawn, I too was thinking that finding a way to shame the insurance company publicly may help - after all they need the general public to buy insurance from them to stay in business and if Joe public thinks they won't get new treatments when they need them, they may just decide to give their business to a different company.
Also what about some of the big charities over there that fund all the trips/gifts/dreams etc for children with cancer - could they not be prevailed upon to place money where it may save a life rather than give a few trip to Disney - I know the kids who get the trips/gifts get enormous benefit but a life is just a little more important!!
Will try to come up with other suggestions.
Take care and lots of love
Mum/Nana
Hi. This is Kaylie's mom. It was good seeing you Thursday at the hospital. I finally found this website just in time to see your post about Jaylin. We were in the hospital when she was diagnosed and she is a very special little girl. If we can help you in any way to plan a fundraiser for her, my mother and I will do all we can to help. I will try to think of something and if you come up with anything please e-mail me and we will get together. Hope Scott is feeling better. Tell him we are thinking of him and praying for him every day.
Hope to hear from you soon.
Tisha
tishagunn@yahoo.com
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