Justice 4 Dom:  Pittsburgh Mom Fights to Save Son!

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

LETTERS FROM NANCY PANTONI


​Webmaster's note:  Nancy is so concerned about Dom's well-being that she has written pleas for help to the Governor, the Mayor, her local Representatives, the Department of Justice, the Office of Intellectual Disability, the Dr. Phil show, the Police Department, and even to President Obama. Below are just a few of the letters Nancy has written. If you are outraged and appalled at the way Nancy's son Dom, and her entire family have been treated, please join us in this letter-writing campaign! Please write a letter to anyone you can think of who might be able to help Nancy regain guardianship. It truly is a matter of life and death, now more than ever, with Dom being in Stage 3 Kidney Disease! Thank you for taking the time to visit this website, and thank you for your support.


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​November 10, 2013

The White House
Attention: President Obama
1600 Pennsylvania Avenue NW
Washington, DC 20500

Dear Mr. President Obama,

I am a desperate mother who has a 27-year-old son Dominic with a genetic disorder called Deletion 22Q Syndrome. Four years ago he was placed in a group home in Allegheny County under the care of a state-appointed guardian from Jewish, Family and Children’s services. At that time I was not qualified to take care of a person with this debilitating condition. I was told that my son would be properly cared for and that I would have frequent visitation with him, be kept updated on any medical issues, and be a part of the decision-making process in regards to his care. The guardian went back on their promises to me; severely restricting my visitation and blocking me from all medical decisions regarding my son. They don't even inform me when he's in the hospital.

Dom is kept on a plethora of medications, which I believe are being used as a chemical straitjacket. I feel these drugs are significantly impairing his quality of life. And according to the expert in Deletion 22q disorder, the medications Dominic is taking are known to be ineffective for his rare genetic disorder and can have serious, debilitating side-effects. I believe Dom is suffering from some of these side effects, including tardive dyskinesia.

My son has gained 80 pounds, developed diabetes, tardive dyskinesia  (which is permanent and debilitating) and advanced kidney disease while under the care of his state-appointed agency. (He had none of these conditions prior to moving into the group home.) There is a new medication available to Dominic called Demser that specifically targets a chemical imbalance in people with 22q disorder and significantly improves their quality of life, but the guardian refuses 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.

My son Dominic desperately needs your help, Mr. President. I have been on a mission for the last 4 years to save his life and have written to state reps, senators, mayors, etc. to no avail. I simply cannot find anyone that cares for my son’s miserable – almost-like-prison way of life. My son wants to be home with his family, but I cannot do anything to reverse the state-appointed guardianship. I have in the last 4 years obtained training in how to take care of someone with this genetic disorder. I am a certified Registered Nurse from CCAC Community College, PA. I have AANC Certification, am a Nutritional Consultant and have been trained in crisis management in 2010 through Mercy Behavioral Health, PA. I also worked in group homes as a registered nurse and have a Psychology degree through Point Park University, Pittsburgh, PA.

Dominic is totally demoralized over this situation he's been placed in against his will. I believe the staff that oversees his care at the group home is unable to provide the specialized care that someone with his genetic disorder needs. The guardian is restricting him from his loved ones. He lost his father, who he was very close to, unexpectedly in 2012, and is only allowed contact with me, his mom for one hour per month. Everything he's ever known has been cruelly and unjustly taken away from him (his job, his home, his family, his health and his very dignity.) He calls his "home" his "prison." He desperately wants to be home for Christmas.

Mr. President, I plead to you to please help us receive a Christmas miracle. Would you intervene and give Dominic a chance to live a life of dignity and life he deserves? 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. I sincerely hope you find this story as gut wrenching as I do and are moved to take action. If not, I fear that Dom might die a painful, premature death alone, without his Mom and younger brother by his side.

Mr. President, I beg you as a desperate mother please help my son, and unite this family for Christmas. 

With greatest gratitude and sincere thanks,

​Nancy Pantoni


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September 15, 2013

Dear Chief Regina McDonald,

I am a concerned mother. My son, Dominic Pantoni, has been 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 support coordinator through Family Links to help me manage some mental health concerns that have come up. I wanted temporary guardianship but was told that permanent guardianship was the only option available, 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, 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 totally excluded out of 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 have only seen my son one time in 6 months. They have no future visitation arranged for me at this writing. My son is not allowed to live a normal life of a 27 year old. He's not allowed to call me, he can't own a cell phone or a computer, and he calls his placement," his prison."  My son Dom desperately wants to see me and tragically lost his father suddenly in 2012. We were a close family before all this transpired.

Dom is kept on a plethora of medications, which I feel are being used as a chemical straitjacket. I believe these drugs are significantly impairing his quality of life. According to the world's leading expert on Deletion 22Q Syndrome, Dr. William D. Graf, MD, FAAP, FAAN, Professor of Pediatrics, Departments of Pediatrics and Neurology at Yale School of Medicine, the drugs Dom is being given are known to be ineffective for his disorder. These drugs are also known to cause horrific side effects, and Dom appears to be suffering from some of these, including TARDIVE DYSKINESIA (involuntary body movements), which can be permanent and debilitating. 


My son has gained 80 pounds, developed diabetes, tardive dyskinesia and advanced kidney disease while under the care of the state-appointed guardian. He had none of these conditions prior to entering the group home. There is a new medication available to Dom, called Demser, that specifically targets a chemical imbalance in people with his disorder, and significantly improves their quality of life, but 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.


I sincerely hope you find this story as gut wrenching as I do and are moved to take action. If not, I fear that Dom might 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 


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Fall 2013


To Whom It May Concern,

My name is Nancy Pantoni, and I am a concerned mother on a mission to save my adult son, Dom. He was born with a genetic disorder called Deletion 22Q Syndrome, and I believe he is being medically and emotionally mistreated by his current legal guardian.

My son was born with special needs. Dom has a state guardian and is residing in a group home. I was promised 4 years ago by the guardianship agency that Dom would receive proper care for his condition.

Since being placed under the supervision of this guardian, Dom’s weight went from 154 pounds to 230 pounds, an increase of 50%. He has developed diabetes, advanced kidney disease and tardive dyskinesia, which can be permanent and debilitating.

He appears to be continually over-medicated and suffers from a myriad of side effects from a plethora of medications.
According to the world's leading expert on Deletion 22Q Syndrome, Dr. William D. Graf, MD, FAAP, FAAN, Professor of Pediatrics, Departments of Pediatrics and Neurology at Yale School of Medicine, the drugs Dom is being given are known to be ineffective for his disorder. I believe some of those medications are contributing to, if not causing his advanced kidney disease. 


His guardian, for no legitimate reason, has placed extreme restrictions on him and his family. Dom is not permitted a cell phone or a computer and cannot call or see me, his mom. I have only seen my son once in the last 6 months. His younger brother, Vince, is only permitted to see him once a month. We were a close family before this guardianship, and Dom sorely misses the family members he grew up with for 24 years.

​My son, who is only 27-years-old, will soon need to be on dialysis three times a week — for the rest of his life — if my call for help is not answered. My son calls his placement "his prison." What has happened to our family is inhumane and unjust. Please help us hire an attorney to give my son a fighting chance for the care he needs and deserves.


—​Nancy Pantoni


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6/17/2013

To Whom It May Concern,

This letter is to explain and support my position as a mom desperate to save her son’s life. I’d like to present you with the facts as I see them from the beginning. My son 
Dominic was born with a genetic disorder called Deletion 22Q Syndrome. This whole unfortunate ordeal began in 2009 when Dom began developing mental health issues and behavioral problems — commonly related to his disability. These behaviors eventually got him evicted by the landlord from the family home that he shared with his younger brother and me. 


At the time, I had very few supportive services to manage these behaviors. My son ended up being housed in temporary placements by Family Links, his base service unit at the time. He repeatedly ran away from these placements, as they were entirely inappropriate for a young man of his age. (He was placed in a senior center, for example.) I tried housing him in his own apartment, but that only lasted one month.

Again Dom was homeless, and that’s when the support coordinator from Family Links suggested that we (me and my ex-husband/Dom’s father) look into getting Dom a guardian through Jewish Family and Children Services. We were told they could place him somewhere and keep him there, and that they would have more supports

available than we had. 

I agreed reluctantly and stated that I had only wanted temporary guardianship for him (until his Consolidated Waiver came through). I was told that only permanent guardianship was available, which I found out later to be false. (I learned that there were less permanent options available). So with Dom being without a place to stay, I agreed to it at the time. The guardian informed me that I would have liberal visitation with Dom and be a part of all decision-making processes, which never happened. 

Long story short, It has been a nightmare ever since. After about a year, Dom became obsessed with going back home to his family, and every time he would talk to me he would beg me to take him back home, and he also stated regularly that he would kill himself if he had to stay there permanently. He was in total despair and missed his family desperately. 

In order to try and give him some hope, I would tell him that there was a chance that he could come back home — if he made good progress at the group home. The guardian did not like that I was giving him hope of returning home, and that our entire communications always revolved around Dom begging me to get him out of there. 

Dom calls his placement his “prison,” and does not live a normal life by any stretch of the imagination. He is not permitted to own a cell phone or computer, or use the house phone to call people. He only sees his brother and grandfather one time a month for only one hour. Family and friends have extreme difficulty reaching Dom by phone. The 
phone goes to fax often, and when we do get through, and leave a message with staff for Dom to call us, he often doesn’t get the message.


My son Dom lost his father unexpectedly in October 2012. His father would visit him regularly, and they had a close relationship, so this was devastating for Dom. Then 
cruelly, two months later, the guardian announced that I wouldn’t be having any more contact with Dom. I was cut off from all contact with Dom on Christmas Eve, 2012. Dom had effectively "lost" both of his parents within two months.


Fortunately, my visitation was finally reinstated in August 2013. But, I had to endure almost NINE MONTHS without any contact with my own son! In my opinion, having this restriction 
placed on me only two months after the death of Dom’s father was cruel and inhumane on the part of the guardian.


The following are my many complaints that I have against the guardian:  In my professional opinion, as a Registered Nurse of 15 years, as well as a Certified Nutritional Consultant, I believe that the guardian is not acting in Dom’s best interest. Dom has really deteriorated in the last four years under the guardian’s supervision.

Dom has gained 80 pounds, and has developed Diabetes, High Cholesterol, Tardive Dyskinesia, and is in Advanced Kidney Disease. In 2012, Dom saw two medical doctors who prescribed nutraceuticals to offset his unhealthy diet and combat inflammation in his body. The guardian gave these to him for six months afterward, but then stopped. They are no longer providing these to him, in spite of it being recommended by his doctors. In addition, the guardian is pushing vaccinations on Dom, even after learning from me that he’s had severe allergic reactions to them in the past, which required emergency intervention.

Dom is fed an unhealthy diet of fast food and processed food. This diet has contributed to Dom’s obesity, which is exacerbating his health problems.

The guardian has Dom being treated by doctors, who in my opinion, are not knowledgable enough about Dom's rare genetic disorder to provide him the best possible care. Under the guardian's “care,” Dom has gone from stage 1 Kidney 
Disease to stage 3 Kidney Disease. Early medical and nutritional intervention might have prevented the disease to progress so far in such a short time frame.


A guardian is supposed to honor family cultural preferences, and this guardian is not honoring my family cultural health practices — such as going to Integrative doctors that are much more knowledgeable about overall health.

In closing, my son Dom is being institutionalized with extreme restrictions on him and his family. I believe he is being placed in a “chemical straitjacket” to make things easier for the staff. The drugs Dom is being given have scientifically documented (and often debilitating) side-effects, which can sometimes become permanent, such as tardive dyskinesia. Dom  is suffering from this exact side effect, tardive dyskinesia, which results in involuntary body movements. If he continues to receive the drug (or drugs) that caused this horrific side effect, it can become permanent, if it's not already. 
According to the world's leading expert on Deletion 22Q Syndrome, Dr. William D. Graf, MD, FAAP, FAAN, Professor of Pediatrics, Departments of Pediatrics and Neurology at Yale School of Medicine, the drugs Dom is being given are known to be ineffective for his rare genetic disorder.


I believe the guardian and the group home have formed a misguided vendetta against me based on misinformation, and they seem to be using me as a convenient scapegoat for their inability to make progress with Dom. (In my opinion, Dom has shown no significant improvement in 4 years). 


—Nancy Pantoni


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Webmaster's note:  the following email was received by Nancy Pantoni as part of an exchange
​discussing the use of a drug called Demser in the treatment of Deletion 22Q Syndrome.

From: robert.shprintzenVCFSCenter 
To: Nancy Pantoni
Sent: Mon, Apr 29, 2013 9:39 pm
Subject: Re: Dom

No…some (drugs) are metabolized in the liver. Demser is actually also metabolized in the liver, but when there are excessive levels in the blood stream, the kidneys filter it out and it can collect as crystals, especially if people are not well hydrated, which is often the case in people who are institutionalized.

It still seems to me that the biggest problem is that you do not have legal custody and decisions are not in your hands. Other modifications can be made, such as eliminating all medications (I suspect Dom may not be any worse once off meds) and then seeing if kidney function is restored or improves. But until someone else can make a decision, this will be a problem. 

Robert J. Shprintzen, Ph.D.
President and Chairman of the Board
The Virtual Center for Velo-Cardio-Facial Syndrome, Inc.
www.vcfscenter.com
robert.shprintzen@vcfscenter.com
Phone: 315-682-3627
Fax: 480-247-4290


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4/12/2013

To whom it may concern,       

                                                                                           

My heart-wrenching story is about my journey as a crusader mom on a desperate mission to save my son, who is living a life of inhumane suffering as a result of falling victim to the corruption of our mental health system. 


Here's my story:  my 26-year-old son, Dom, was born with a genetic disorder called DiGeorge Syndrome, a.k.a. Deletion 22Q Syndrome. My son was developmentally delayed throughout school and attended special-education classes, but ultimately graduated from high school. He was diagnosed as borderline mentally retarded, but was high-functioning enough to take buses on his own and work as a bagger in two grocery stores for four years in his early adulthood. 


At around age 22, he started exhibiting mental health conditions ranging from obsessive-compulsive disorder, to impulse control disorder, to paranoia. These conditions affect a certain percentage of those afflicted with Deletion 22Q. Long story short, as these conditions worsened, he lost his job and got evicted from his home (by our landlord) due to his impulse control disorder and acting out. 


Eventually, his father and I put him up in his own apartment, which lasted only a few weeks. Running out of options and having no support system, he ended up temporarily in a motel till we could figure out the next step. We (his father and I) eventually ran out of money and options for his placement. When we were at our wit’s end, Dom’s support coordinator from Family Links talked us into signing Dom over to a guardianship agency. She convinced us that this was our only option because they had many more services at their fingertips than we had, and that they could have him in housing immediately. 


They said that we would have very liberal visitation and decision-making power. We agreed to the state-appointed guardian, which turned out to be the worst nightmare a parent could imagine. The most tragic part of this is the fact that from the very start I was adamant about wanting only temporary guardianship for my son until his Consolidated Waiver came in, which would provide us with all the services he needed. (At that time, Dom was at the top of the waiting list for the waiver, and it did in fact get approved -- one month later.)


The support coordinator and the guardian basically lied me to. I and was not provided with other, less restrictive, less permanent options, which I later learned were
available. In the four years under the guardian’s supervision, my son Dom and our family have been living a nightmare. Dom’s health has rapidly deteriorated to the point where he has become obese, developed diabetes, and his cholesterol and triglycerides are through the roof. A doctor recently told us that he's in the early stages of heart disease already at the young age of 26. A few days ago, I was notified by the guardian that my son has advanced (stage 3) kidney disease from pharmaceutical abuse and sub-optimal health management. I was never even told about his first or second stage disease progression. In my opinion the guardian’s decisions are detrimental to my precious son's physical and psychological well-being.


I believe that the guardian is basically institutionalizing him by placing him in what appears to be a “chemical-straitjacket” with medication after medication (8 in total). They have him on heavy-duty sedatives including anti-psychotics. These drugs have been scientifically proven to (potentially) have horrendous, debilitating side effects, like Tardive Dyskinesia, a neurological disorder consisting of involuntary movements of facial muscles and limbs. Tardive dyskinesia can become permanent if the drugs causing it continue to be administered over a long period of time. Dom is suffering from this horrible side effect, TARDIVE DYSKINESIA! He is so drugged up that he sleeps 16 hours a day and has no energy to exercise or live a normal life. 


The guardian has cut me off of all contact with my son. Since Christmas Eve 2012, I have had no contact with him and have no idea how he’s doing. My son gets so desperate to talk to me that he intentionally gets himself admitted to hospitals just to be able to talk to me. My son lost his father (with whom he was very close) due to his passing away unexpectedly in October 2012. So my son essentially “lost” his mom and dad within a couple of months’ time. My son is devastated and demoralized. He feels his rights have been violated. 


The group home does not allow his life to have any semblance of normalcy. They will not allow him a pet, or his own computer, or let him watch the movies he likes. And he complains of abuse from the staff to the point where he isolates himself in his room for up to 40 hours a week. My son is in such despair now that he is telling me that he would rather be dead than live the life that his guardian has given him. My son and I often cry ourselves to sleep at night and are totally devastated. 


Dom has a younger brother and a cat at our home that he doesn’t get to see and misses both of them desperately. Everything my son has ever known has been cruelly yanked away from him:  his job, his home, his health, and his very dignity. I hired an attorney (whom I've been working with for about 6 months) in an attempt to become my son’s decision-maker (legal guardian) again in order to reverse all the damage that has been done emotionally and physically. I have already paid the attorney $10,000 dollars with no significant results yet. I am a single mom supporting another son at home and am bankrupt from legal fees. I'm basically working to pay this attorney while my household bills are going unpaid. 


My son and I deserve better. I am a respected member of my community. I sing in my church choir, work full-time as an RN, and part-time as a nutritionist. I don't know where to turn and will never give up fighting for my son. I am literally trying to save his life while at the same time trying to sustain myself financially. My attorney is demanding another $5,000 to finish up the petitions he needs to file for a hearing before a judge. Our family has no means of getting additional monies. We are desperate for help and to see our son. We want to get him out of their so-called “care” ASAP, before he ends up on dialysis the rest of his life and before irreversible damage sets in. Can you please help us save our son’s life? 

 

--Nancy Pantoni