Susan Santora McArthur Without Pity
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asking for money again
Susan Santora McArthur - Facebook
That heart stopping moment when Samantha’s mito dr emails me and I sit there, afraid to open it. Wants to set up an appt to go over everything. Did tell me tons of stuff are abnormal and also wants to start her on vitamin D asap. Also wants more labs done. Ughhttp://www.caringbridge.org/visit/samantha427
Well, the holidays have come and gone. On to a new year. I hope it finds us all in a much better place than 2012 proved to be. So much has happened in the past year. While we’ve been able to add in a few foods to Samantha’s diet, we opened up another chapter of heartache as we venture down the road to uncertainty with the Mitochondrial issues. When we saw the mito/genetic doctor in Atlanta, she put Samantha on what is called the “mito cocktail”. This is a variety of things compounded into one medicine. The dr gave us a script for 2 months, while we were waiting the outcome of testing. The dr recently called in a new script for one year. This broke my heart. It indicates that she still wants Samantha on the cocktail. We received bad news from her buccal swab testing and it indicates a mitochondrial problem. We have completed all labs and results are in. We are currently waiting to talk with the mito doctor to see where we go from here. It’s so hard dealing with a specialist out of state. Insurance refuses to help out financially because it is an out-of-state doctor, even though I have explained to them that there is no other doctor like this in Florida. We still have the site up and running for anyone wishing to donate to help Samantha. http://www.gofundme.com/helpingsam. We truly appreciate everyone who has been able to help at this point. More out of pocket expenses are coming for doctor appointments, meds, etc. We seem to have a handle on Samantha’s EoE at this point. The G tube was such a blessing, allowing us to start with a “clean slate” and trial food slowly one at a time. We’re still not where we want to be and EoE has reared it’s ugly head last night. But overall, I think this Mito stuff is going to be much more of a challenge. We are trying to take things one day at a time. That’s all we can do.
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Things that make you go hmmmm…….
On December 20, 2012, Susan’s daughter’s feeding tube was removed. It was a Christmas miracle! This happened after the expensive cruise that was given to her in the summer, after the trip to Washington DC, after the fundraisers, after the trip to Atlanta, and after the numerous articles in the media. She told the media her daughter could only eat potatoes and required medical formula. She garnered sympathy. She cashed in. All the while, the story was not the entire truth.
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What is the correct version of the story?
Susan McArthur posts the following in the UMDF Facebook Group:
Susan Santora McArthur Well I have always kept a log. I write down the date, the time, what she eats, how much, and any reaction (due to the eoe). And she has done great that way. The problem is with her continuous overnight feeds, its an extra 7,000 calories a week! So she has gained weight. She is 15 and wants the g tube gone now. I cant say I blame her.Susan Santora McArthur She’s gone several times without a feed. Sometimes the pump shuts off, sometimes its beeped and she turns it off, sometimes we have no clue at all and it seems fine but the bag is full in the morning. So she’s definitely been ok that way. And during the day,. she doesnt use it at all. Eats all her safe foods. We have a few foods from each food group now.-
Susan Santora McArthur Her argument to me is “what if i didnt even HAVE a g tube? What if i was perfectly fine with no eoe before the mito stuff? Not ALL mito kids have tubes”. UGH
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Susan Santora McArthur Nooo she doesnt need to supplement those 7,000 calories. We need to get RID of those calories. She is gaining on average 2 pounds a week because she gets all her calories during the day and then in addition gets those extra “feed” calories.
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Susan Santora McArthur She did agree to drink a Splash box or two to supplement nutrition if she had toSusan Santora McArthur She does have a dietician. She has been a huge help over the past few yrs for her eoe. She also sees a psych as well to help get her thru things. Its sooo hard! UGHSusan Santora McArthur Im not sure if the dietician knows mito as well. This will all be discussed when we see her doctor on Wed. This has not been an overnight decision. We’ve been tossing it around for quite sometime. I will email Dr K as well.Susan Santora McArthur Aw Im sorry Susan Price Davis. That was the start of a diagnosis for Samantha’s EoE (Eosinophilic Esophagitis). She would not gain weight when she was younger, food stuck, etc.Susan Santora McArthur Here is her diet: Fruits - Peaches, Bananas; Veggie - Cooked carrots, potatoes, tomato, onion; Meats - Ham, Turkey; Grain - Gluten Free pasta, gluten free bread, brown rice; Nuts - pistachios; Dairy - Eggs baked in something; Misc - Gatorade, Koolaid, basil, salt, Coconut Milk ice cream, lactose free yogurt.Susan Santora McArthur Samantha enjoys turkey bacon and enjoys turkey burgers on gluten free bread with chopped onion on it. Her diet is more healthy than mine. LOLSusan Santora McArthur I hate onions. I hate the smell in the house. I teased her and told her I wished she has picked something else to trial a while back. LOL. But she has done so good so far. She has a fruit cup for a snack or a banana or cup of the lactose free yogurt. She eats just a handful of 20 pistachios a day. I cant believe how well-rounded her diet has become. She seemed to fail food trials one after the other for so long and then all of a sudden she started to do good.
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Multiple media articles stating Susan’s daughter can only have formula and potatoes
huffington post:
http://www.huffingtonpost.com/2012/06/19/samantha-pecoraro-15-cant_n_1605851.html
New-press.com dated 12/12/2012:
Girl meets food blog dated November 2012:
http://girlmeetsfood.com/samantha-pecoraro-benefit-dinner/
The Today Show dated July 2012:
Cape Coral Daily Newspaper dated December 2012:
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Susan hates fraud
http://www.fox4now.com/features/4inyourcorner/125143194.html
July 2011
Having trouble feeding your family? Apply for food stamps! That’s the message coming from the state officials pushing the program. 100,000 people in Lee County have already done just that. But with so many people getting help at the check-out from Uncle Sam, how can we be sure your tax dollars are being put to good use? As Four In Your Corner’s Colleen Hogan found out, there are plenty of loopholes and not enough oversight in the food stamp program.
A family of four making 44,000 a year can get almost $700 a month toward the cost of groceries, even more if you have more kids. That’s a lot of taxpayer money. While it’s no surprise that some people abuse the system, I’ve uncovered a new way scammers are trying to double dip, on your dime.
Mom Susan Mcarthur spends plenty of time in the Walmart store on Skyline Blvd in Cape Coral.
“I’m here everyday getting something,” Mcarthur said.
Some days her shopping trips take longer than others, depending on how much she’s harassed by people trying to get her to buy their food stamp debit cards for cash.
“It bothers me because the card is there to help families, and his situation was helping my family, please buy the card,” Mcarthur said.
Once, a guy even followed Susan and her daughter around the store! Grabbing her arm and pleading with her to give him cash for his card. Susan didn’t, knowing it was illegal and doubting there was even money on there.
“I know he’s probably trying to get cash for drugs, alcohol, cigarettes, whatever the case may be,” Mcarthur said.
She thinks more needs to be done to crack down on fraud. Both at the Walmart store where she shops and from our government which doles out the benefits that you pay for!
So first, I went to the store where Susan shops to see what they’re doing to protect customers from these scammers. But no one there would talk to me. So I called the corporate office for comment. But I had to leave a message to ask my questions.
Since no one called me back, I called again. Still no response. In all, I called three times over the course of a week. But I didn’t stop there. I asked a spokesperson for the food stamp program what he thought about people trying to sell their debit cards that you pay for.
“When that person uses a card in a fraudulent way, number one, it wastes all our money, myself included; I’m a taxpayer as well.”
So once more I got on the phone. This time calling the USDA. They’re the ones who are supposed to be cracking down on fraud. I asked them, in a voicemail and an email, what they’re doing now that Four In Your Corners brought this “cash for card” scheme to their attention. A spokesperson agreed to a phone interview, then blew me off. I called back two more times after that, and no response.
Regardless, our Cape Coral mom still thinks laws should be changed, to make sure your money’s going to the people who need it.
“It bothers me because there are legitimate people out there that need to feed their family who are out of work from all walks of life right now,” Mcarthur said.
Just because Walmart and the USDA didn’t get back to me by the deadline of this story, that doesn’t mean I’m giving up on this. I will keep on this, because after all, it’s your taxpayer dollars.
COLLEEN HOGAN
CHOGAN@FOX4NOW.COM -
Iron Chef Petition
This summer, Susan Santora McAuthur begged Iron Chef to create a meal for her daughter:
Could only eat potato and formula in the summer.
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Stop the corn sugar
http://www.change.org/petitions/stop-the-cornsugar-com-commercials
Susan’s petition
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ABC news article?
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Susan’s daughter in a news story about CT scans
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Cape Coral Girl with NO FOODS getting awards
Samantha Pecoraro10th grade, Oasis High SchoolDaughter of Susan & David McArthurSamantha suffers from a rare, incurable white blood cell disease called Eosinophilic Esophagitis (EoE) which causes the body to think food is a parasite and attack itself. It causes the body to be allergic to several if not all foods. Samantha has lost all food from her diet and is fed with a special formula through a tube in her stomach. She has suffered with this since birth, but was first diagnosed in 2007 at the age of 10.Though she suffers chronic pain and endures numerous hospital visits, surgeries & procedures, Samantha never complains and is always focused on raising awareness of the disease in order to raise money for research for a cure. She continually advocates for those who suffer with EoE and has made several awareness videos and has drawn attention to her disease through many types of media. Samantha is a remarkable teen striving to help others with an issue she is far too familiar with.
