I'm sorry that your child is going through all this and the burden that must be borne by you and your family coping with it.

I wish it were not so for you all.

However, you now have started 4 topics on the front page of this forum, and several on another one, concerning her.

I'm starting to get "Reiley overload" and frankly, her medical condition and information concerning her are no-one else's business, and I'm surprised you continue to lay it all bare for the world to see.

Some of us don't have children, and don't actually care about the health of some child we don't know, will never know and don't want to know. But we can still help if we want to, without being given "guilt-trips" everytime we look at the local news forum.

I know that sounds cruel and cold-hearted; well some of us are like that and have no interest in anyone's offspring. The world isn't perfect and no-one is altruistic.

Oh, and by the way, before you slam me, bear in mind that I am a contributor to the charity account of "Casey's Children"

Simply stated...catch22 or anyone else that might feel the same..

Reiley's Mom is on a mission to help her daughter get well...any loving Mom in her position would and should take advantage of any means possible....I have never met her but I can tell she is determined to see her child well...would anyone want less for their child or someone they loved...?

Shame on anyone that has the gall to challenge her efforts....if they disturb you so much...duh...simply ignore the threads....

Thank you for those of you who are not bashing me for posting about my daughter. Life is hard enough without being attacked by others just for posting about their child. I know there are people in Maricopa who do want updates, since we are asking our community for help in getting her the medical treatment she needs. I feel it's my obligation, my responsibility to keep everyone informed about what is going on with her.

I think any person trying to help a friend, a child, a family member, a SO, or a  ball and chain, would do the same. Reach out, tell their story, try and find help.

I am truly a mother on a mission to get a diagnosis for my daughter and help her not be in so much pain, learn, grow and to be happy. I'm sure a lot of that is what most people want for other people.

Susan

If I were you I would put my story out there in as many places as I could too. There has to be a specialist out there somewhere who could look at her and say "I know exactly what's wrong", you just have to find him/her and it may be completely by chance. Put a video on youtube, see if someone at the Republic will be willing to do a story on her, isn't there a doctor that does a radio show on talk radio? Call in and see if he can give you a new idea or maybe just the right person will hear it.  Be agressive and don't stop regardless of what people like catch-22 say. 

So not to cause another thread, (just for you catch 22)  I'm just posting additional updates on this thread.

First update, I got a call from Marsha Dunn Klein, she runs mealtime notions in Tucson, she is a very renowned OT (in her field) who specializes in feeding. She got a hold of Reiley's GI and the GI is going to look at EVERYTHING Marsha suggested on her report about Reiley. So they will be doing a lot more than I had anticpated on Thursdays scope. Thank you Marsha!

Next update is sad news for me.

I got the call today I've been waiting for from the genetics counselor... was there muscle left from the bx Reiley had when she was 13 months old with the two different clinics that had Reiley's muscle that they could use to do the testing they never did...

The answer is no. Mayo in MN had no muscle and the clinic in Phoenix and frozen muscle on a block. They can't use it, it's not usable for the testing they should've done when the first suggestion of mito or metabolic came up.

I'm so sad. I'm so frustrated. So a muscle bx now totally confirmed to have been in vain and
left Reiley with an almost 2" scar on her leg.

My wife and I are fortunate enough to have six children who never required a day in the hospital. I can't imagine having to deal with a chronic illness for a child. It must be frustrating, heartbreaking, and exhausting. I can imagine that using the forum is theraputic in a way, and if that's the case, then it's serving a great purpose.

For those who have to endure the inconcenience of skipping over a couple of threads on their way to their favorite discussion of weeds, builder signs, HOA woes, or the latest excitement from the double-wides, imagine how inconvient it would be to have to be at the hospital at 5:30 AM (and most likely spend the day there).

Good luck to Reiley and family. I hope that some day you're able to look back on this as a challenge in life that you were able to overcome.

DD:  I hope this is a real deal considering PCH is geared off of ACCHS and insurance funding.  Everyone is jumping on Catch-22 but it does appear orchestrated for money.  Sorry but life is life, and maybe Rick and Amy should contribute 50.00 instead of the wantabe councilman fund.  OKOK

Hi there. I don't know who Rick or Amy are. And yes PCH does accept her AZ long term care insurance. If you are curious about what is being orchestrated for our daughter, then you could read the archive story on 85239.com in the community section, or the Maricopa Monitor that came out last Friday.  Thanks.

I knew it wasn't you Amy " )

No Garden Glow....shame on you for buying into anything that you read. I applaud Reiley's Mom for doing whatever she has to for her child. But you can't blame Catch 22's skeptisim. We live in a world where people take advantage of caring, compassionate people all the time. I read the story, and all the posts. This is not the direction I would take, but who am I pass judgement?  I'm a Dad, so I wish good luck to Reiley's mom, and I hope for the  the best for your daughter.