Re: [JRA) renamed..possible scholarship/jra charity

[Guest guest]

I am interested in this idea...I am sure there are lots of

possibilities as to how it could be used. scholarships to the

conference, assistance with transportation/medical expenses, etc...

We have a lot of people on this list that have varied occupational

backgrounds (attorney's accountants, event coordinators, etc) that

could probably assist as far as giving some direction as to how you

would make such a charity legit and to safeguard against fraud.

, I definatley think your idea is one worth pursuing! Standing

alone our pocketbooks may look pretty empty but as a combined force

we may be able to make a real difference in the support of our

online jra family!

(Aundrea 10 systemic jra)-

-- In , " " <brian.taylor@...>

wrote:

>

> Hi Val,

> You can complain any time you want. I really wish I had the money

to help

> you. Hopefully Dr. Passo can help you. You know, I spend about

$5 per

> month on lottery tickets hoping for something that will never

happen. You

> know we have a big enough of a group here that we could almost

start a

> charity of our own. If each one of us would donate $5 per month

to the

> cause, we could take care of our own to speak. Most of us at one

time or

> another need extra help and this might be a way to do it. It

might be a

> logistic nightmare to decide who needs the help the worst, but

with verified

> medical bills, I would give it shot. Would anyone else?

>

> UPDATE From Val (mom of marissa) very long!

>

>

> I feel like I have dropped off the face off the earth over the past

> few months. I have been to Cincinnati every month for the last 6

> months. We decide to just keep all the specialist at the same

> hospital since we don't have many in our immediate area anyway and

> would have to travel at least 3 hours to Nashville. As a matter of

> fact I just got home last night after 10 days there. It is taking

a

> real financial and emotional toll.

>

> Marissa is doing okay. Her official diagnosis right now is

> Arthropathy Undefined, which is really a lack of exact diagnosis.

I

> guess that just means joint disease. She is on Celabrex and that

> was helping for a while but at this her pain seems to be creeping

> back up. Her other symptoms i.e. GI pain, fatigue, eye

> pain/irritation and light sensitivity seem to be also creeping back

> up. She sees Dr. Passo again in June. Of course, if she continues

> to get worse I will call him.

>

> Marissa is having some other problems as well. First, she has

> chronic constipation. She goes everyday but I guess not enough.

> Anyway, her intestines are stretched out severely, which is

probably

> what caused the problem in the first place. She has to be on

> Miralax long term. She is still loosing weight she is down to

> 48lbs. She is seeing an endocrinologist because she isn't growing

> height wise either. She will be going for a growth hormone

> stimulation test in May. If she doesn't grow in the next three

> month she will need growth hormone injections.

>

> Also, she had a DEXA scan which cam back abnormal showing

> osteopenia. It may be do to her small stature that it was

abnormal

> and that she doesn't actually have osteopenia but that aren't sure

> yet. If it is osteopenia it would be inpatient infusions every 3

> months. I am still waiting to hear on that. Marissa

> ophthalmologist moved away so I am now seeing someone at Cincinnati

> and I am afraid he is missing things. Marissa has the same

symptoms

> as in the past when she needed steroid drops and he is saying she

is

> fine. I'm thinking of going to Memphis to see her old

> ophthalmologist but its 5 hours away.

>

> And all this is just one kid. My son has all the same

> disorders as Marissa plus many more. Recently he was diagnosed

with

> severe (when I say severe I mean 3x what is consider severe)

> obstructive sleep apnea. He just spent 4 days inpatient for that

> and is now on a CPAP. It is taking him a while to get use to it.

> He has to go through some other test to try and find what may be

> causing the obstruction. There are 4 major things that can cause

or

> complicate apnea.

> The FIRST is obesity, which is not an issue for . .

> The SECOND is hypotonia (neuromuscular weakness). Hypotonia can

> cause the throat and/or lung muscle to collapse when relaxed and

> sleeping. has had for year but never obstructed his

> breathing. It mostly only interfered with his limbs up until the

> last year.

> The THRID is reflux, which has pretty bad and is not under

> control. But it cold also be that the apnea causes/effects the

> reflux. Its kind of a chicken or the egg scenario.

> The FOURTH is that the lower mandible/jaw can be too far back and

> cause the tongue or something else to be blacking the throat.

> also has this problem pretty severe.

>

> So as you can see the problem may be one of these things, all or

any

> combination (except the obesity). I do feel it is worth trying to

> find out and fix all the problems we can. I think it is worth

doing

> whatever necessary to cure the apnea and not have to live on a CPAP

> machine.

>

> Also, is not having breathing problems during the day that

> seems to be involuntary muscle weakness. His breathing muscle

> strength is only 50% of what it should be. His neurologist thinks

> it is possible that his hyponia is progressing and that he might

> have a progressive neuromuscular disorder. No one ever tested him

> when he was younger and the muscle problems started. The thought

of

> a progressive disorder that can cause his breathing to feel scares

> the CRAP out of me.

>

> And again is suffering from chronic joint pain and GI pain.

> His GI says his eosinophilic colitis is in remission so he must

have

> IBS from all the previous damage and all the medications he is on.

>

> Also, my middle daughter who has reflux has been having

> terrible pain. She had a scope last week and we are waiting for

the

> results.

>

> Oh and too boot, our prescription plan refused to pay for

> Cellcept, which is an immunosuppession medication for is

> eosinophilic colitis. It is the first medication that ever

> sustained remission without steroids. It cost $800. a month

without

> insurance. We are already paying about $1000. monthly for

> prescriptions. With all the traveling to Ohio, prescriptions and

> other medcial bills we are going to drown soon.

>

> I am sure I miss things but I have complained enough. Sorry to

> rattle on so long but it is just a bit overwhelming at time and

time

> consuming. One of the reasons I haven't been posting is that I

feel

> like I would just be complaining too much and feeling sorry for

> myself which I do like to do. I find it unproductive.

>

> Thanks for listening,

> Val

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