Fundraiser for Denise Melucci
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In January of 2014, after more than six years of illness, medical tests and misdiagnoses, my mom, Denise Melucci, was diagnosed with Systemic Scleroderma, which is the hardening tightening of the skin and connective tissues.
And thanks to an innovative and little-known approach to treating rheumatic diseases such as Scleroderma, her disease went into remission. For five years she was able to live a normal life.
However, in the summer of 2019, her Scleroderma returned.
And on top of being diagnosed with Systemic Scleroderma (the most fatal form of the disease), she also has autoimmune diseases normally associated with Scleroderma: Hashimoto's Hypothyroidism, Fibromyalgia, Sojourn's syndrome, and Raynaud's syndrome.
What is Scleroderma?
Scleroderma is the chronic hardening and tightening of the skin and connective tissues.
Systemic Scleroderma, which is what my mom has, is the most serious form of Scleroderma. It is also the most fatal of all the rheumatologic diseases.
Rheumatic diseases such as Scleroderma are autoimmune, meaning that the immune system begins to attack one’s own tissues for no apparent reason.
The symptoms occur because the body sends scar tissue to skin and muscle. They therefore harden over time.
Systemic Scleroderma Causes Her Constant, Debilitating Pain
My mom is a gifted artist (that's one her paintings below, with me and my sister, Mia), but she can no longer hold a paintbrush. The simple task of holding a fork and eating or brushing her hair or teeth is painful.
Even worse, most of the time we can’t even hug or touch her, because it causes her too much pain.
What is the Treatment?
We are asking our friends and family to help us raise enough money so she can travel to Horn Memorial Hospital in Iowa for treatment. She is hoping to go as soon as possible, but we need the money to get her there and be treated.
Horn Memorial is one of only a handful of hospitals across the country where she is able to receive the antibiotic therapy she needs. It is the same hospital where the doctor treated her and pushed this debilitating disease into remission in 2014.
Other treatments prescribed by other doctors have never worked or helped her.
In fact, most of the treatments prescribed made her conditions worse, or brought on harmful side effects. Prednisone treatments left her with too much fluid going to her heart and caused a lack of oxygen. Because of this, she had to spend a week in the hospital.
The problem is, there are very few medical doctors that offer this groundbreaking antibiotic therapy (also known as Antibiotic Protocol or AP) which is a slow, low-dose form of antibiotic treatment. Sadly. it is believed most medial facilities don't offer AP because there is little profit in it and it goes against standard practices.
Our family knows, from first-hand experience, that Antibiotic Protocol is the only way to help her as it did six years ago.
Why We Need Help With the Costs
As a single mom, the high cost of both travel and treatment for her disease is out of reach.
Of course, for someone with an autoimmune deficiency, the risk of even leaving the house during a pandemic is extreme.
But the alternative is to live with continued suffering with unbearable pain. And because Systemic Scleroderma is progressively fatal, going without treatment is not an option.
We are hoping to raise enough to help cover some of the costs of her travel and the lifesaving antibiotic therapy she would receive at the Horn Memorial Hospital in Ida Grove, Iowa.
Your donation will help cover her costs to get to and from Iowa, plus the hotel room and any meals during the week of her twice-daily treatments.
Because she will be weak and unable to drive due to the treatment, the overall travel expenses include two people.
Donations will also help cover additional medical expenses she can’t afford on her own. Insurance may not cover all costs, such as the ongoing medications she’ll have to take for the rest of her life.
For example, because of the hardening of her skin and collapsing arteries, a normal IV is not an option. She will instead require a PICC Line where . Before the actual treatment even begins, the cost of the PICC Line alone is $2,600.
It makes me sad to see my mom suffering with considerable pain throughout her entire body. No matter what she does, she is in constant pain.
She has done all she can to keep up her health, changing her diet to eliminate all unhealthy foods, including sugars and grains. And she is supplementing with important vitamins, fish oils and herbal infusions.
But changing her diet won’t stop the disease.
We can’t continue to watch her suffer each and every day, living in so much pain. We are scared that she will die. But we know once she can get to Iowa for her treatment, her life will be better.
I hope you will donate to help our mom. We are grateful for you and your friends and family who can help with any amount possible.
(This is a picture with my mom and my sister Mia at the beach in RI.
And thanks to an innovative and little-known approach to treating rheumatic diseases such as Scleroderma, her disease went into remission. For five years she was able to live a normal life.
However, in the summer of 2019, her Scleroderma returned.
And on top of being diagnosed with Systemic Scleroderma (the most fatal form of the disease), she also has autoimmune diseases normally associated with Scleroderma: Hashimoto's Hypothyroidism, Fibromyalgia, Sojourn's syndrome, and Raynaud's syndrome.
What is Scleroderma?
Scleroderma is the chronic hardening and tightening of the skin and connective tissues.
Systemic Scleroderma, which is what my mom has, is the most serious form of Scleroderma. It is also the most fatal of all the rheumatologic diseases.
Rheumatic diseases such as Scleroderma are autoimmune, meaning that the immune system begins to attack one’s own tissues for no apparent reason.
The symptoms occur because the body sends scar tissue to skin and muscle. They therefore harden over time.
Systemic Scleroderma Causes Her Constant, Debilitating Pain
My mom is a gifted artist (that's one her paintings below, with me and my sister, Mia), but she can no longer hold a paintbrush. The simple task of holding a fork and eating or brushing her hair or teeth is painful.
Even worse, most of the time we can’t even hug or touch her, because it causes her too much pain.
What is the Treatment?
We are asking our friends and family to help us raise enough money so she can travel to Horn Memorial Hospital in Iowa for treatment. She is hoping to go as soon as possible, but we need the money to get her there and be treated.
Horn Memorial is one of only a handful of hospitals across the country where she is able to receive the antibiotic therapy she needs. It is the same hospital where the doctor treated her and pushed this debilitating disease into remission in 2014.
Other treatments prescribed by other doctors have never worked or helped her.
In fact, most of the treatments prescribed made her conditions worse, or brought on harmful side effects. Prednisone treatments left her with too much fluid going to her heart and caused a lack of oxygen. Because of this, she had to spend a week in the hospital.
The problem is, there are very few medical doctors that offer this groundbreaking antibiotic therapy (also known as Antibiotic Protocol or AP) which is a slow, low-dose form of antibiotic treatment. Sadly. it is believed most medial facilities don't offer AP because there is little profit in it and it goes against standard practices.
Our family knows, from first-hand experience, that Antibiotic Protocol is the only way to help her as it did six years ago.
Why We Need Help With the Costs
As a single mom, the high cost of both travel and treatment for her disease is out of reach.
Of course, for someone with an autoimmune deficiency, the risk of even leaving the house during a pandemic is extreme.
But the alternative is to live with continued suffering with unbearable pain. And because Systemic Scleroderma is progressively fatal, going without treatment is not an option.
We are hoping to raise enough to help cover some of the costs of her travel and the lifesaving antibiotic therapy she would receive at the Horn Memorial Hospital in Ida Grove, Iowa.
Your donation will help cover her costs to get to and from Iowa, plus the hotel room and any meals during the week of her twice-daily treatments.
Because she will be weak and unable to drive due to the treatment, the overall travel expenses include two people.
Donations will also help cover additional medical expenses she can’t afford on her own. Insurance may not cover all costs, such as the ongoing medications she’ll have to take for the rest of her life.
For example, because of the hardening of her skin and collapsing arteries, a normal IV is not an option. She will instead require a PICC Line where . Before the actual treatment even begins, the cost of the PICC Line alone is $2,600.
It makes me sad to see my mom suffering with considerable pain throughout her entire body. No matter what she does, she is in constant pain.
She has done all she can to keep up her health, changing her diet to eliminate all unhealthy foods, including sugars and grains. And she is supplementing with important vitamins, fish oils and herbal infusions.
But changing her diet won’t stop the disease.
We can’t continue to watch her suffer each and every day, living in so much pain. We are scared that she will die. But we know once she can get to Iowa for her treatment, her life will be better.
I hope you will donate to help our mom. We are grateful for you and your friends and family who can help with any amount possible.
(This is a picture with my mom and my sister Mia at the beach in RI.
Organizer and beneficiary
Sophia Sansonese
Organizer
Foster, RI
Denise Melucci
Beneficiary