Topic: Do you remember my post "Dying 13 year old?" - UPDATE!!
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I want to share some exciting news with so many of you who cared about her, lifted her up in prayer and even sent her gifts to remind her she was not alone.
You are all so very kind.
This little girl, now in middle school, still in treatment for lyme and arthritis, has 3 wonderful friends who have organized a 5K race/walk in her honor and to help pay the ongoing medical bills.
I will post an update from her mom, below.
Please read what the power of 3 amazing 14 year old girls can do!!!
Monitors, this should probably be in "Activism" but I thought I'd put it here for people to see.
Move it if you must but be warned this post is very heavy and hard to move!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
It has been confirmed that "Journey 4 Josie" will be held Sat, June 4th 8 to 2pm at Mechanicsburg Boro Park (where the pool is).
This is a 5K walk/run. Runners register at 8 or 8;30 and walkers start immediately after runners take off.
We have major sponsors, reps coming from Lyme Dis Assoc of SEPA, Arthritis Foundation, to hand out info and answer questions for the general public.
We will have prizes awared to top runners, and all our sponsors will have space available for advertising in exchange for their donation.
Free t-shirts to all those who register.
Her friends designed our logo.
People can dowload a paper register form or donation form if they can't participate in the walk/run, or they can donate on our website thru paypal and get an automatic receipt from paypal for tax purposes.
We ARE non-profit established!
We will also have entertainment (a well-known country band is donating and also giving their time to play in the high school stadium so runners and walkers can filter into the stadium after they are done until we announce all winners of race and winners of raffles).
My daughter's friends have been knocking themselves out!!!
We also have a two school fundraisers going connected to our community 5K.
The arthritis foundation is going to heavily advertise Journey 4 Josie for us and I've been asked to speak at the arthritis walk after the walk ends inside hershey park (may 21st). I'm nervous LOL. I don't speak well in front of people.
Please pass the word on about our 5K. We hope to have our website up by Tues, April 12th, or shortly thereafter. Maybe you could spread this around on lymenet for me???
Money raised will be split in thirds between Josie (to help pay outstanding medical bills from when she didn't have medicade and some that medicade does not cover), a third will go to Lyme Disease Association of Southeastern PA (because regular lyme disease foundation never returned my phone calls), and a third will go the Arthritis Foundation (Harrisburg Chapter).
We are so excited, and I can't express enough how much all this young girls mean to me and Josie. We love them dearly.
Oh, Bob radio will probably be at our event, but either way they are going to give us free PSA and also want to interview all the girls live on the radio!
Patriot News is coming, and I'm waiting to hear back from the tv stations to see which one can come.
I'd love to have a senator or two show up! Any suggestions??? which one was it again that had lyme, I can't remember his name???
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Anyone want to walk with me?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Wow, I will not have time to walk but how about donations? God bless her and those wonderful angels she calls friends !
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Wow, that's great!!!
Wish I could walk with you, 17hens!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
That's great news...what a great idea. I hope she is starting to feel a little better. Glad she is getting proper treatment!
Thanks for sharing. Sorry I can't walk with you!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Hey everybody - - wish you could all walk with me too!
Make sure to check back in a few days to see if their website is up - Josie's mom is posting her story.
and one radio station talked about it a few times in the 2 days prior.
Hopefully next year will be better. Maybe.
Heaven forbid someone mentions lyme - then they practically hang up the phone on you.
80 - 100 (my guestimation) people showed up for the 5K race and 1 mile fun walk/run.
Before the end of school last year, Josie's middle school raised $7000 for this fundraiser (amazingly wonderful)!!!
The fundraiser itself raised another $7000!!!!!!
The total will be split 3 ways - 1/3 to the RA foundation, 1/3 to lyme research and 1/3 for Josie's medical bills.
About 6 people came to our Lyme table during the event. We had set out papers w/ info on "10 most important things to know about lyme," "lyme and kids" and "PA senate bill 210." Everyone that came to the table either had lyme or knew someone who had lyme and all were interested in the senate bill. Yeah!!!
The praise goes to Jesus Christ for being ever present in Josie's life and for feeding the hungry crowd with only a little bread and fish!
How is Josie doing; can you give us an update?
Posts: 964 | From san diego | Registered: Oct 2009
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I am working on getting an acurate update and I'll post it here as soon as I get it.
Thanks, everyone, for your continued concern for this little girl.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Here's the update!!
Hi Hens -
It's a wonderful feeling to know people have not forgotten about my Josie! She is resilient and amazing and a blessing.
People have been emailing me non-stop telling me she is their hero after meeting her at our 5k this past weekend (www.journey4josie.org)
Not sure where I last left off with my new lymenet friends, but thru the month of April, May and June, Josie needed to be home-schooled
Her school is absolutely amazing and supportive. Her teachers volunteered their own time come to my home and tutor her the rest of the year so she wasn't getting tutored by strangers who weren't familiar with her situation and the abilities she did or didn't have.
As we got the 8th grade end of year report card, I am happy to say, Josie has maintained a 96 average! Straight As, the last four years running! I don't know how she does it.
And now mom is a mess, cause my baby is starting 9th grade at the highschool at 13. OMGosh! She is overly-excited as she will try again starting back with full days and a full schedule!
Unfortunately, she is still in her wheelchair 100% of the time, and can't stand up and bare weight, which she has now gained up to 63 lbs thanks to tube feeding.
Anyway, the school has been more than cooperative and has gone out of its way to do whatever necessary to accomodate her. The only sad part was the other day at school, when the kids were running around visiting the high school they also got to talk to other faculty and hear about all the extra school activities available to them.
Unfortunately Josie can't do the ones she wants...very heart-breaking to me...but she just shrugged her little shoulders, grinned at me and said "I'll join my friends in spirit". That's my girl!
It's just so unfair...and as I was telling a very dear friend the other day...a day must come to every mom when you realize your child must grow up faster and that we can't carry them anymore...regardless of what kind of issue the child is dealing with. They have to learn that they can still have a good life regardless of what comes their way. Josie is learning that now.
I'm happy to announce too, that Josie has been selected as the 2011 Honoree/poster child for the National Arthritis Foundation's Jingle Bell Run. Its their biggest fundraiser of the year with over 3,000 runners. Josie will speak, meet n greet, newspaper articles, tv, the works. I plan to sneak in some lyme awareness along the way!!!
As I mentioned she is still in her wheelchair, joints still ache, but mostly worse with pressure drop. Right now she is a mess with the big storm coming!
Lyme symptoms are slowly coming back and she's tired a lot, so I'm more than convinced she still has the lyme despite her treatment she had months ago which we had to stop because the arthritis was so out of control her rheumatologist said she couldn't be on the antibiotics she was on and still get the high dose of arthritis meds she needed.
We switched her from Enbrel to Remicade back in April. Remicade helps with the pain that's for sure, although she still has bad days, its not nearly as bad as it was.
Her left left wrist and elbow still down turn, and her right knee seems to be permanently bent in a 90 degree angle. We contemplated surgery but the rest of her joints aren't strong nor mobile enough to support the rigid therapy she would need to support her right knee.
Her GI doctor never did figure out what caused the severe stomach pains...I can tell you that they have mysteriously disappeared without explanation.
She yet again have experienced a mysterious rash (one spot really), very close to location of the other two she had off and on. Seems about once a year she gets this thing.
Dumb doctors tried to tell me it was fungal after just looking at it. Well I have one word for that..."b.s." LOL I replied " she has not been outside in two weeks...its not fungal". I
Took pics anyway, and again it came and went within 3 days, as it did the other two times. All 3 rashes were on the arm that is the worst. Coincidence, maybe, but I doubt it.
Lately her legs have been itching and just this morning she was complaining of pain inside her left leg, not in a joint area. She has had a few poking, touching painful situations on and off the last few weeks.
We go back the end of September to see our LLMD in CT, I'm trying in the meantime to find another LLMD for a 2nd opinion and another pediatric rhuematologist for a 2nd opinion.
Problem is with finding another LLMD, there are no pedi LLMDs in PA except for Dr. C., and she no longer accepts medicade.
I don't know where to go with Josie. I'm so confused. If anyone has any suggestions, I'm open.
I'm still not working full time, just part time, money is tight, and I have no insurance. I just saw someone end of July, and its been confirmed thru Igenex that I have lyme, and i'm waiting to see what co-infections if any that I have. I won't harp on my story, I'm more focused on Josie right now.
So how many of my lyme friends are going to attend the big hearing (PA Senate Bill #210) coming up this Tuesday??? I'm so excited to be speaking there.
Other good news...relating to Journey4Josie (and ignore the story on our website...I need to update it and haven't had time)...but the good news is...we are giving a large chunk of money to support lyme disease, arthritis foundation to send 5 kids to camp jra where my daughter went on grant money cause i couldn't afford to send her.
I had volunteers approach me who want to help me take Journey4Josie one step further...to blow it open wide, and use it as an education tool, much like lyme action PA, but a place also for people to blog or chat. We want this to be a place for anyone to make donations to lyme and arthritis or both.
Lots of great things are in the works for Journey4Josie, including a possible name change to Journey-With-Josie, but that will much later down the road.
I had so many people contact me that wanted to attend but couldn't for health or distance reasons, so I'm looking for two volunteers to help me bring the Journey4Josie event (5k run and one mile fun run/walk) to the Phila and Pitts areas. That means you'd be working with me and our events coordinator at Journey4Josie here in Mechanicsburg. Anyone interested, please let my dear friend "Hens" know via private message, and she will forward it to me.
I have had so many people tell me that they need Journey4Josie, that Josie is their inspiration. I feel we need to continue with it, as I feel that this is my purpose in life. Silly maybe, but true. Josie is an inspiration to others, but Josie and ALL OF YOU together...are my inspiration! I will fight for all of you!
Oh and if you want to see her, check out www.wgal.com and look for video of news blip regarding our fundraiser last weekend. Unfortunately they couldn't show the whole interview, but I was there for the important part she said when asked how do you feel about what has happened to you...she replied "...well,...(as her eyes welled up)...everything in someone's life happens for a reason...good or bad...its what you make of it and do with it and somehow turn it in to a positive that really matters!" Thats my girl!!!
Much love to you all, Lisa & Josie
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Wow, a compelling and tragic story. This is worse than my daughter but the path she was on b/4 seeing Dr. J.
I don't know of one Rheumatologist who knows how to treat lyme (contrary to what they think). Immune system supression meds unfortunately are in contrast to the Lyme meds.
Granted I've only spoken with two but I've read up on quite a few others. They follow the teaching & articles of AS.
Maybe when she see's Dr. J in September he will suggest Tindamax and see who that works for a few months.
The rash sounds like Bart or Bart Type bacteria is still an issue.
Tindamax (for Lyme), Zithromax (Mycoplasma & parasites) (Levofloxacin for Bart type organisms).
Not sure if she can do this all at once.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
| IP: Logged |
A local high school in our area did "laps for Lyme and Lymphoma," since one highschooler had Lyme and one had Lymphoma. The laps, btw, were ice skating laps, and they got the San Jose Sharks ice hockey team to sponsor them!
[ 08-28-2011, 01:28 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
hens,
This is so heartbreaking to say the least. Has any doctor treated her for parasites with actual antiparasitic drugs like alina, albenzazole, ivermectin etc as Dr. K. suggests?? Even antiparasitic herbs might help if she proves to have a herx reaction.
I had severe arthritis and when doing salt/c and herbs my joints would get little scabs and parasites would emerge. I feel so very strong that she needs to be tx for parasites.
How about an appt with Dr. K. even tho it could take awhile?
Sending big prayers for Josie.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Gael, I will pass on your concerns. She has never been treated for parasites. No money for Dr. K. Can't go into detail but believe me when I say NO money. So sad. But I will seriously talk to her about this. Thank you.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
posted
What an amazing child and mom! I am humbled by your strength, resilience and spirit. You deserve only goodness, and will pray that you continue to get the help and support needed to get Josie healthy.
Is there anyone that is a patient of Dr. C., or knows her personally, that could appeal to her to treat Josie? She got into lyme treatment because her son was ill, and I know she would be receptive to Josie's story. Unfortunately I know many call her asking for help, so it is difficult to single out one person.
I would be more than willing to assist in generating funds, and/or setting up a paypal account to help get Josie concurrent treatment for lyme with her arthritis.
Let us know how we can help....
Posts: 964 | From san diego | Registered: Oct 2009
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
baileypup,
First, please know that I am not Josie's mom, only a caring friend. I have my own kids with lyme, neither anywhere near as sick as this little girl thankfully.
Josie's mom has asked Dr. C. and was told "no exceptions".
Any help this family could get to generate or otherwise help with funds would be so appreciated.
The PA House of Rep. had their hearing this week on the PA Senate Lyme Bill#210 and Josie's mom was asked to give her testimony. Not a dry eye in the house and she only mentioned the tip of the iceberg.
If you or anyone else thinks they could help, please contact me and I will get you in touch with Josie's mom, who BTW, is suffering now with severe Bart symptoms including brain fog. If she loses her keys now she looks in the fridge for them and there they are.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[kiss]](graemlins/kissing.gif)
![[group hug]](graemlins/grouphug.gif)
- wish you could all walk with me too!![[Cool]](cool.gif)
Very cool!
![[Frown]](frown.gif)
Printer-friendly view of this topic