Help Nancy Pantoni save the life of her disabled adult son, Dom, ​who suffers from a rare genetic disorder called DELETION 22Q.

Justice 4 Dom:  Pittsburgh Mom Fights to Save Son!

NANCY PANTONI IS FIGHTING TO SAVE HER ADULT SON'S LIFE! Help is urgently needed for legal fees in Nancy's fight to regain guardianship of her adult son, and obtain proper medical care for his rare genetic disorder, DELETION 22Q SYNDROME. Your donation in any amount will be greatly appreciated, as Nancy has already exhausted her life savings in this battle. But, as a mother, she cannot not give up! Help is also needed in the form of advocacy, legal aid, volunteering at future fundraisers, and sharing this message with family, friends, and the media. If you can help in any way, please contact Nancy Pantoni by leaving a voice message at:  718-867-8500 or sending an email to: Thank you.

blog:  nancy's battle to regain guardianship of her son, dom & save his life!

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​​Blog Entry by Nancy Pantoni, December 15, 2013

I AM A CONCERNED MOTHER. In my opinion, a crime is happening, and I cannot stop it. My son, Dominic Pantoni, was diagnosed with a genetic disorder called Deletion 22q syndrome. He currently resides in a group home in Allegheny County. He has a guardian from Jewish, Family and Children’s services, who was recommended to me by my son's supports coordinator through Family Links to help me manage some mental health concerns that arose in 2009. I wanted to find temporary guardianship for my son but was told that there was permanent or nothing, which I later learned was not true.

This all took place in July of 2009. At that time, I was promised that my son would be properly cared for, and that I would have frequent visitation with him, and be kept updated on any medical issues and be a part of the decision-making process. This never happened, and at this point, I am being almost completely excluded from my son's world. I am not even notified when my son is hospitalized.

This guardian has placed extreme limitations on my son and on my ability to communicate with him, I am only permitted to see him for one hour of supervised visitation for only one day a month. My son is not allowed to live a normal life of a 27-year-old. He's not allowed to call me, and they won't let him have a cell phone or a computer. He calls his placement, "his prison."  My son, Dom, desperately wants to see me and tragically lost his father suddenly last year (in 2012). We were a close family before all this transpired.

Dom is kept on a plethora of medications, which I believe are being used as a "chemical straight jacket." I feel the horrific side effects of these drugs are significantly impairing my son's quality of life. I have consulted with the world's foremost expert on my son's rare genetic disorder, Deletion 22Q Syndrome. His name is Dr. W
illiam D. Graf, MD, FAAP, FAAN, who is Professor of Pediatrics, Departments of Pediatrics and Neurology at Yale School of Medicine. Dr. Graf has informed me that the drugs Dom is being given by the guardian are know to be ineffective for his disorder. The guardian has not consulted with this expert, even though Dom could potentially benefit from his expertise.  

My son has gained 80 pounds since being placed in the group home under the "care" of the guardian, and has developed diabetes, tardive dyskinesia  (which can be permanent and debilitating), and advanced kidney disease. It is my belief that these health conditions were caused by Dom not receiving the proper medical care and nutrition for his rare genetic disorder. There is a new medication available to Dom, called Demser, which specifically targets a chemical imbalance in people with his disorder, and significantly improves their quality of life. They refuse to put him on it.

It is just a matter of time before my precious son has to be on dialysis, and I am on a desperate mission to stop this. In my opinion, what is happening to Dom could eventually cost him his life, while they happily take his SSI money. I sincerely hope you find this story as gut-wrenching as I do and are moved to take action. If not, Dom is sure to die a painful, premature death alone, without his Mom and younger brother by his side. This is a tragedy that can be averted with your compassionate help.

Respectfully yours, 

Nancy Pantoni, Pittsburgh, PA
Dominic Pantoni's Mother

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Blog Entry by Deena Alansky, December 15, 2013; Update March 30, 2014

BACKGROUND INFORMATION & AN ADVOCATE'S PERSPECTIVE:  Since being placed in a group home in 2009, Dom's health has dramatically deteriorated to the point where his mother, Nancy Pantoni, fears that he could die of kidney failure! His kidneys were fine when he entered the group home, but over the past five years he has gained 80 pounds, developed diabetes, high blood pressure, high cholesterol, gallbladder disease, thyroid disease, and tardive dyskinesia. He had NONE of those conditions when he entered the group home. Now, he is in Stage 3 of kidney disease, and his kidneys are close to failing. Nancy is concerned that he may end up on dialysis for the rest of his life if he remains in his current living situation.

Judge Lawrence O'Toole has ruled against two petitions that were filed. One petition asked for an independent guardian to be appointed, and another sought to allow independent doctors to evaluate Dom's current medical and psychological condition. Nancy offered to pay the medical bills, so it wouldn't have cost the facility a dime. These were reasonable requests, given Dom's declining health, yet both petitions were denied by Judge Lawrence O'Toole.

If the facility has nothing to hide, then why deny a mother the opportunity to seek a medical evaluation of her son? Are they worried what another doctor, independent of the facility, will find regarding Dom's health? T
he current situation is grave for this young, 27-year-old man, caught up in the bureaucracy of a system that is supposed to be helping him, but instead, based on what Nancy has told me, seems to be slowly killing him. *See March 2014 update below.

Nancy was also banned from visiting her son for over a year, and just last summer, the current guardian and the facility took Nancy to court in an attempt to terminate her contact with her son permanently! However, it backfired on them, and the judge ordered them to reestablish visitation! Thankfully, Nancy has regained visitation with her precious son, albeit on an extremely limited basis. She has "supervised" visitation -- for only one hour, one day a month. In my opinion, it is an outrage to prevent a mother from seeing her child!

The goal for Nancy now is to have a new, independent guardian appointed for Dom; someone who would provide Nancy with unlimited visitation with her son, allow her to choose his doctors, make decisions regarding his medical care, and  allow Nancy to provide nutritious, healthy meals for Dom, instead of his current diet of processed food and junk food. Ultimately Nancy wants Dom 
moved out of his current living situation, a group home, where she believes he is not receiving the appropriate treatment for his various medical and psychological conditions. She wants to move him into a facility that is better able to treat his rare disorder. If a new legal guardian is appointed, that person would have the legal authority to move Dom out of his current group home, where his health has deteriorated over the past four years. This is the goal!

One aspect of this case really blows my mind. 
Why on earth would any person with an ounce of compassion and human decency go to court and actively fight against a mother's right to see her own child, especially a SICK child? (Yes, he's full grown but he's still her "child.") And why would they fight a mother's request for an independent medical evaluation? It's outrageous! I think if the residents of Pittsburgh knew this was happening right in their own backyard that they would be outraged, too! That is why I volunteered to make this website for Nancy pro bono. I believe very strongly that there is an injustice going on, and I am joining Nancy in the fight for JUSTICE FOR DOM!

Some of you might be wondering how all this happened in the first place. Back in 2009, Dom was happily living with his mom and younger brother, and working as a bagger at a local grocery store. He had graduated from High School, was holding down a full-time job, and living a relatively high-functioning life for someone with his genetic disorder and mild mental retardation. But, in the spring of 2009, 
Dom's illness got worse, and he developed new mental health symptoms that eventually led to him losing his job and being evicted by Nancy's landlord from the family home. Nancy and her ex-husband Tony (Dom's father) were desperate to find him housing and medical care, and they reached out to various social service agencies. But Dom ended up being placed in entirely inappropriate housing (such as a senior home, for example), and he would run away after a day or two. Nancy and Dom then tried putting Dom in his own apartment in Brookline, but the neighbors were harassing him, so the worried parents temporarily put Dom up in a hotel.

Nancy and Tony were running out of money to pay for the hotel, and they feared that their precious son would end up homeless. They were desperate to prevent that worst-case scenario from happening. That's when their case worker from Family Links suggested that they get a state-appointed guardian for Dom. That would guarantee that Dom would receive immediate housing, food, and proper medical attention. Nancy asked if a temporary guardian could be appointed, but was told that it was not possible. She and her ex-husband were led to believe this was an "all or nothing" agreement. So, under extreme duress, and fear of their son becoming homeless, they agreed to the guardianship in 2009. And so began their nightmare.

Of course, Nancy regrets making this decision, but none of us can see the future, and she had no way of anticipating how horrible this situation would become. And we don't have a time machine to go back and change the past. All we have is the present. I am hoping that this website will be a tool in helping Nancy get a new guardian appointed -- one that will work with Nancy; letting her choose his doctors, and giving her a say in her son's care. The goal is to get Dom the proper medication he needs to treat his rare genetic disorder, and for Nancy to be able to visit her son whenever she wants with no restrictions! I hope this website brings attention to a young man's struggle for life, living in almost total isolation from his family and the world.

MARCH 2014 UPDATE:  After the new attorney, Matthew Lovewell, filed a petition this month, the guardian has now agreed to allow Dom to be examined by three medical doctors chosen by Nancy! (A genetic expert, an integrative doctor, and a psychologist or psychiatrist.) This is a huge victory for Nancy, but she is responsible for paying for these doctors' medical fees, and this will be quite expensive. We are asking for the public's support! If you are able to help in any way, it will be greatly appreciated. No donation is too small to help. Please visit the Donation Page for details. Thank you.


Deena Alansky, Pittsburgh, PA
Nancy's Friend & Advocate

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Blog Entry by Eddie Matetic, December 18, 2013

Webmaster's note:  On August 31, 2013, Nancy's friend, Eddie Matetic, was a participant in the North Course Challenge Power Walk in Westlake, Ohio, where he won first place. He decided to walk this year in honor of Dom and he designed and made a few special commemorative t-shirts, featuring Dom's face on the front and back. Eddie wore the shirt at the event, and was featured in an article in the local newspaper. Through his efforts, he helped raise awareness for Dom's situation, and for all people born with Deletion 22Q Syndrome. Eddie is committed to helping Dom and presented Nancy with two hand-made t-shirts he had made for the event  featuring a photo of Dom on the shirt! (one for Nancy, and one for Dom)

I was power walking for Dom hoping to create interest out there for 22Q and possibly for Dom. I was hoping to change his poor living conditions. I went through a similar experience with my son, who was drugged by medical professionals who call themselves doctors, and I almost lost him. Thank God I succeeded in persuading my son to stop taking these medications. Power walking for Dom  I felt I was also power walking for my son. The cause is the same. In a way, I feel that Dom is almost like my son, even though I have never met him. 

I hope Dom can one day live a normal life for his 22Q condition and have dreams and a positive environment to live in. I hope he will find a job and someone to love him. I hope he can dream the way we all dream, to be somebody, and to love somebody. Our dreams for the future should be his dreams.  I pray that somebody out there can help Dom to be free from all these unnecessary medications
that he will come out and do what he can do to save Dom from being in a daily  straitjacket overdosed by antidepressant chemicals and doctors who do not care. Think of this: if this was your son, what would you do for him? Can you do the same for Dom?  May Dom one day be free, free to live, free to dream, free to work, free to love!!!”  I want nothing less and nothing more. 

Eddie Matetic