Albany County Correctional Facility for Children's Benefit Albany NY

VIDEO Link- Connor Menneto To Receive Cleveland Clinic's COURAGE AWARD

The Cleveland Clinic recognizes 3 children every year out of the thousands they treat with their Courage Award- This year Connor has won the award! It is the first time someone treated in the pain program will be recognized. He will receive this HUGE honor at a black tie gala in Cleveland in April, 2010. 

Cleveland Clinic: Pain clinic last resort for children

CLEVELAND -- Most of us have experienced physical pain but imagine it being so intense you can hardly move or be touched. That's life for some teenagers at the Cleveland Clinic Pediatric Pain Rehabilitation Program. Click to view Connor's Channel 3 News Interview- Cleveland Clinic 

ACCFCB takes this opportunity to CONGRATULATE Connor, this courage award is absolutely EARNED! Keep up your tremendous effort and please share photos with us of your Courage Award so we can post it here on our website. Sincerely, John Smith- President 

(E-mail Tue 3/02/10 10:32 PM)-    

Hi John (Smith),  Please share with your group Connor's honors. They are a very important part of his story.  Connor finds the courage everyday to get up and live knowing he will be in pain and that the CRPS is spreading but more importantly that he has people that believe he can get beyond that. He knows there are people that believe he is more than his diagnosis. I can not tell you how much it helped him and I do know we had your support. When it comes to illness and children, miracles can happen with the help of caring people.

Thank you

The Menneto Family

 

Connor Suffers with "CRPS (Complex Regional Pain Syndrome), first discovered in the Civil War, is still barely understood. But it's known to come about after multiple injuries to an extremity -- such as the breaks in Connor's leg.

Like the phantom sensations experienced by an amputee, the disease causes the brain to send out pain signals for trauma that doesn't exist. And the pain is far worse than any trauma might be." Times Union Staff Writer ALAN WECHSLER

Connor Menneto (17) Making Amazing Progress and The News..........‏

Uplifting Message From Connor's Mom Below-

   
Connor Menneto makes amazing Progress against CRPS  

"CRPS (Complex Regional Pain Syndrome), first discovered in the Civil War, is still barely understood. But it's known to come about after multiple injuries to an extremity -- such as the breaks in Connor's leg.

Like the phantom sensations experienced by an amputee, the disease causes the brain to send out pain signals for trauma that doesn't exist. And the pain is far worse than any trauma might be." Times Union Staff Writer ALAN WECHSLER

Friday January 15, 2010- 

Hi everybody,

Hope you all had a great holiday. It was a great holiday for us and January 9th went by without a problem.  January 9th was the anniversary of Connor's CRPS.  To celebrate he went snowboarding.  He bundled up and went out to enjoy.  It took him 4 days to get back to status quo but he did it. 

Connor and I are going back to Cleveland this week. The clinic is making an informational DVD and they want Connor to be a part.  The DVD will include footage from when he first went there until now.  They want to show his amazing progress. The local news in Cleveland (channel 3) also wants to interview him.  His story is one of their best successes.  Since you are all a part of his story I hope that I will be able to get a copy of the DVD and make it available if you want to see it.  Our family is so very grateful to all of you who made Connor' progress possible. Connor continues to fight everyday to get his life back and he grows stronger with every new accomplishment..  We don't want to think about where he would be if you all didn't help.  As I told the ACCFCB who were there with support, it took a village to get Connor well.  There is no way to thank everyone enough. I think of your help every time I hear Connor laugh or pound down the stairs. We know he will have to battle this disorder but where he is today is an amazing place.

We wish you all a Happy New Year

Rose Menneto

   

"Knowing you were there gave us comfort and support"- Rose Menneto (A mom's message to ACCFCB)

Connor Menneto Update 

From:	Rosemary Menneto Connor's Mom (rmenneto@yahoo.com)
Sent:	Tue 11/17/09 3:57 PM
To:	John Smith (schoooby@hotmail.com) (accfcb@nycap.rr.com)

Date: Tue, 17 Nov 2009

Hi John,

Connor is doing great. He has had a few problems.  He got the flu after the first week of school, he had problems with an irritated spinal nerve, and the last was pneumonia.  He just finished the antibiotics from the pneumonia.  The stress his body has been under seems to make him susceptible to everything but he is getting stronger.  He has missed school for these problems but not because of the CRPS.

Hillary Clinton wrote "It takes a village to raise a Child".  In Connor's case it took a community to make him well.  There is no comparison between Connor when I first talked with you and Connor now.  He is able to live with the pain he has and live the life he wants to live.  He goes to school, plays video games, lifts weights, runs, drives, and is planning for the future.  All things that were impossible for him to do when I first talked with you.  He got to this point because of the aggressive treatment he received from Dr. Appicella and Dr. Argoff.  They got Connor to the best place he could be medically before we went to Cleveland.  Our friends who worked so hard to raise money for Cleveland.  The people that donated money after they read his story in the paper.  Your organization stepping up to help.  Your offer meant that we could take Connor to Cleveland and he could stay as long as needed.  Connor worried as his stay kept prolonging about the cost.  I would tell him not to worry the Correction Officers were there if we needed them.  That safety net let Connor relax and work on his rehab. The staff at the Cleveland Clinic are amazed at how well Connor has progressed. They gave him a lot of credit for pushing forward even after he left the Clinic.  His determination to get his life back was key to him fighting through the pain. 

We still do not have the final bill from the Cleveland Clinic.  Our insurance is now paying for some of the last days of his stay.  The portion that remains may be within our families means to pay.  We will not be sure until we see the final bill.  We have been able to pay the other bills as they have come.  Our family can not thank all of you for being there for our family.   Knowing you were there gave us comfort and support.  It would be great if our insurance paid and you were able to help another family.  Even if we do not need any financial help, your organization has been an enormous help to our family.  You helped to relieve some of the stress our family was experiencing.  Please let everyone know how grateful we are to all of you. I will know soon where we stand with Cleveland.  We will keep you updated on Connor.  Thanks for all your help.

All the best,

Rose

_____________________________________________________________________________

From:	John Smith (schoooby@hotmail.com) (accfcb@nycap.rr.com)
Sent:	11/18/09
To:	Rosemary Menneto (rmenneto@yahoo.com)
Bcc:

Hi Rose,
 
It appears based on your e-mail that the current medical issues Connor is coping with pales in comparison to the pain he previously suffered from CRPS. We are most pleased with your latest update. Thank you very much for the uplifting e-mail regarding Connor.
 
We are very thankful for your feedback regarding the "safety net" that our children's foundation gave to your family during your critical time. Your kind words go a long way with our volunteer group and shows us that we are making a small difference along the way. Your words gave me goose bumps, thank you so much for that on so many levels. It is obvious that you are a strong mom with a deep love for your son and family!
 
We are honored to be a been of your family and we will await future updates on Connor's progress.
 
Please let us know when you receive the Cleveland Children's Hospital invoice and we'll be more than happy to assist you.
 
Sincerely,
John

John R Smith, President

"Albany County Correctional Facility for Children's Benefit, Inc."

806 Huntingdon Drive

Niskayuna, NY 12309

H 518 280-4055

C 518 588-5055

www.accfcb.org 

Connor Menneto Recovering & Playing Baseball Again!

Update from Mom to Connor's supporters:

Connor is doing unbelievable!  He is in school and able to handle the whole day and even goes to football practice most days.  He works out and does drills with the team. He is playing baseball and even pitching.  He slid into home last week got up and ran into the dugout.  He even fouled a pitch off the plate and it hit him in the left leg.  I was terrified.  He did okay.  He still has pain in the limbs but is able to function normally with them.  He still takes Ketamine orally but is off all the other meds.  His liver enzymes are now back to normal.  He is back to being himself.  We go back to Cleveland this week for follow-up. I can't tell how grateful we are to everyone for what they have done for us.  Connor needed the treatment in Cleveland and you all made that possible.

Thank you

Rose (mom)

Connor Menneto is HOME! "pain is pain but suffering is optional"- Connor

8-17-2009 an email From mom to ACCFCB......

 

Hi Guys ,

Connor and I got home on Sunday .  He is walking, climbing the stairs, skateboarding, jumping, and even running.  He is working hard on his arm.  He is able to do so many more things.  He is playing Wii boxing right now,  it is part of the therapy.  It is his favorite part.  I still just sit and watch.  To see him move around and smile.  Him being active and not yelling in pain is still new to me.  I will never take his movements and activity for granted.  I will never take him smiling and happy casually.

The last week of treatment I was told by everyone how different Connor was.  They all kept asking about the changes in his attitude and personality.  He hadn't changed he was becoming himself again. He is back to being outgoing and wanting to interact with people.  He is willing and anxious to try new things.  I watched him becoming himself as he was able to do more things.  The pain is still there but he is able to function.  The function will lead to decreased sensation and less pain.  His new saying is pain is pain but suffering is optional.  He also likes long term problems require long term solutions.  He is still not totally himself but he gets mentally stronger all the time.  He is off all the opiates. He still takes oral Ketamine, he'll stay on that until his function is almost normal.  But he is trying to get off all the other medications. 

Watching Connor in constant pain has been a nightmare, but I feel the nightmare is over.  What he was able to achieve at the pain program was a miracle.  Before we left he felt he'd lost his life and had no hope he could get it back.  He worked hard and there was a great deal of pain but in the end there was hope and a promise of getting his life back. There are no shortcuts in CRPS, he has to work on it everyday for the rest of his life.  He was given the tools he needs to keep the disease in control. 

His father and I want to thank everyone who helped our son get the treatment he needed.  His doctors in Albany did a great job to get him ready for the Pediatric Pain Rehab at the Cleveland Clinic. That was the treatment he had to have.  There was no other way to get him functional.  It awful to know the treatment your child needs and not be able to get it for him.  You and everyone who donates to your fund have given our son back to us.  There are not enough  words to express our gratitude. 

We have not received a bill form the Cleveland Clinic.  We paid them for 3 weeks and Connor was there 7.  There are also going to be charges for treatments that are above their normal care.  I can not say how much it is going to be but we are grateful for anything your group can help us with. 

 

-Rosemary Menneto