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  • Dana

    Dana Summerville SC

    Hi there my son is about to have another open heart surgery and is just 3 years old. He would love a care package if possible. He has HLHS a life threatening heart defect. Thank you

    Hi there my son is about to have another open heart surgery and is just 3 years old. He would love a care package if possible. He has HLHS a life threatening heart defect. Thank you

  • Sabrina Butner RN

    Sabrina Butner RN Mountain view Regional Medical Center Peds Unit Las Cruces NM

    Just wanted to write a short thank you for the generous donation of gifts you made to our unit this year. I cannot express in words how much it not only means to the patient and family members, but to the staff to be able to give a gift after putting kiddos through, often very painful procedures. We are very lucky to be one of the hospitals that you are able to donate to. Your kindness and generosity are very appreciated. Thank you again and have a Blessed New Year!! Sabrina, RN

    Just wanted to write a short thank you for the generous donation of gifts you made to our unit this year. I cannot express in words how much it not only means to the patient and family members, but to the staff to be able to give a gift after putting kiddos through, often very painful procedures. We are very lucky to be one of the hospitals that you are able to donate to. Your kindness and generosity are very appreciated. Thank you again and have a Blessed New Year!!
    Sabrina, RN

  • Amanda Doyon

    Amanda Doyon Greenville, NC

    Desperation Dearest to whom this may concern: I am Amanda Doyon the mother of Jackson Doyon… he will be 3 November 23rd. He was born with a rare disease called Mastocytosis, he had a really hard road but we thought he was getting better. He started being able to go outside without a mask and sun suit. Yet in the first week of October I was rushed by ambulance to the Children’s Hospital for having multiple seizures… no one knew why. 2 weeks later was my follow up appointment on October 17th 2013… my brothers 7th birthday. I expected to have cake and ice cream with my son and play video games with him. Yet I stood in silence when 5 doctors came in the room and told me that the lumps in Jackson’s neck have gotten bigger, they felt something in his kidney, and one of his legs was longer and wider than the other. They first told me that his Mastocytosis was Systemic and involved his Lymphnodes, duodenum, blood, and of course skin. This was my biggest night mare because with Systemic Mastocytosis there is no chance of growing out of it, there is no cure, and it’s a Myleoproliferative Neoplasm Disease (slow growing blood cancer disease), yet no matter how horrible that news was the next news was just as bad. His leg being longer and bigger was a clue as to something else he has, they diagnosed him with Hemihypertrophy. I thought ok just a genetic defect… but they went on to explain that Hemihypertrophy was also a cancer creating disease… kidney cancer, called a Wilms Tumor. Then they said he had it. My world fell apart at that very moment. My son… my 2 year old has cancer. My 2 year old has two diseases created by a genetic mutation that he can never get rid of that creates cancer. So like a wheel he would possibly beat and go through some form of cancer for the rest of his life. Imagine you’re a mother and you hear this news. Now imagine you’re a mother of 2 and you hear this news, then they go on about him being admitted into the hospital for the scans and biopsies of his lymphnodes, stomach, esophagus, kidneys, liver, and bone marrow (again), and so on. My first instinct is okay then what… lets fix him… make him better… please. After all the tears the reality of the world around me and him crashing in sets in. My fiancé Edward had to take a day off work for that appointment and the day he had his seizures. We are already struggling. Our phones got disconnected, we are almost 2 months behind on rent, we are a month behind on our washer and dryer rental, we are months behind on our car payment our only car. We can catch that back up through time but now this… the medical bills and how am I going to watch my other son while Jackson in hospitalized. I need to hire a baby sitter during these times… no money to do this with. Then I find a doctor that can help him possibly, in Statesville, NC. 5 hours away from here but I would need to rent a car, pay for a hotel, gas money, and a baby sitter for my other son. I feel hopeless I really do. So I am basically asking… if you can do anything to help my son absolutely anything…. Please please help him. Donations are tax deductible. If you have any toys you can give away for him to take to the hospital, or things for his room for when he gets to come home so he will like his room, or gas gift cards, or clothes, or anything absolutely anything that could possibly put a smile on his face please please send it. We can’t afford these things but I am doing everything I can to get him to this doctor. I am doing fundraisers and making bracelets to sell and setting up bake sales for every weekend. I am reaching out and begging for help in this. Or if you can do fundraisers please consider him. Help him not me. Please help me at least make his life happier and more comfortable. I provided some links bellow for proof of everything I am saying. http://www.colespages.org/jacksondoyon/pages/visit http://www.flickr.com/photos/rarediseaseday/8420775378/ http://www.wnct.com/story/21013171/service-dog-could-help-child-with-r are-disease story from a year ago https://www.facebook.com/pages/Help-Jack-Jack-fights-Systemic-Mastocyt osis-and-Hemihypertrophy/176089742466437 Information on diseases http://www.mayoclinic.org/systemic-mastocytosis/ http://www.ncbi.nlm.nih.gov/pubmed/12787266 Thank you so much for consideration, Amanda Doyon Contact Information: Mailing Address: 900A Masters Ln, Greenville NC 27834 E-Mail: doyonamanda@gmail.com

    Desperation
    Dearest to whom this may concern:
    I am Amanda Doyon the mother of Jackson Doyon… he will be 3
    November 23rd. He was born with a rare disease called Mastocytosis, he
    had a really hard road but we thought he was getting better. He
    started being able to go outside without a mask and sun suit. Yet in
    the first week of October I was rushed by ambulance to the
    Children’s Hospital for having multiple seizures… no one knew why.
    2 weeks later was my follow up appointment on October 17th 2013… my
    brothers 7th birthday. I expected to have cake and ice cream with my
    son and play video games with him. Yet I stood in silence when 5
    doctors came in the room and told me that the lumps in Jackson’s
    neck have gotten bigger, they felt something in his kidney, and one of
    his legs was longer and wider than the other. They first told me that
    his Mastocytosis was Systemic and involved his Lymphnodes, duodenum,
    blood, and of course skin. This was my biggest night mare because with
    Systemic Mastocytosis there is no chance of growing out of it, there
    is no cure, and it’s a Myleoproliferative Neoplasm Disease (slow
    growing blood cancer disease), yet no matter how horrible that news
    was the next news was just as bad. His leg being longer and bigger was
    a clue as to something else he has, they diagnosed him with
    Hemihypertrophy. I thought ok just a genetic defect… but they went
    on to explain that Hemihypertrophy was also a cancer creating
    disease… kidney cancer, called a Wilms Tumor. Then they said he had
    it. My world fell apart at that very moment. My son… my 2 year old
    has cancer. My 2 year old has two diseases created by a genetic
    mutation that he can never get rid of that creates cancer. So like a
    wheel he would possibly beat and go through some form of cancer for
    the rest of his life.
    Imagine you’re a mother and you hear this news. Now imagine
    you’re a mother of 2 and you hear this news, then they go on about
    him being admitted into the hospital for the scans and biopsies of his
    lymphnodes, stomach, esophagus, kidneys, liver, and bone marrow
    (again), and so on. My first instinct is okay then what… lets fix
    him… make him better… please. After all the tears the reality of
    the world around me and him crashing in sets in. My fiancé Edward had
    to take a day off work for that appointment and the day he had his
    seizures. We are already struggling. Our phones got disconnected, we
    are almost 2 months behind on rent, we are a month behind on our
    washer and dryer rental, we are months behind on our car payment our
    only car. We can catch that back up through time but now this… the
    medical bills and how am I going to watch my other son while Jackson
    in hospitalized. I need to hire a baby sitter during these times… no
    money to do this with. Then I find a doctor that can help him
    possibly, in Statesville, NC. 5 hours away from here but I would need
    to rent a car, pay for a hotel, gas money, and a baby sitter for my
    other son. I feel hopeless I really do. So I am basically asking… if
    you can do anything to help my son absolutely anything…. Please
    please help him. Donations are tax deductible. If you have any toys
    you can give away for him to take to the hospital, or things for his
    room for when he gets to come home so he will like his room, or gas
    gift cards, or clothes, or anything absolutely anything that could
    possibly put a smile on his face please please send it. We can’t
    afford these things but I am doing everything I can to get him to this
    doctor. I am doing fundraisers and making bracelets to sell and
    setting up bake sales for every weekend. I am reaching out and begging
    for help in this. Or if you can do fundraisers please consider him.
    Help him not me. Please help me at least make his life happier and
    more comfortable. I provided some links bellow for proof of everything
    I am saying.

    http://www.colespages.org/jacksondoyon/pages/visit
    http://www.flickr.com/photos/rarediseaseday/8420775378/

    http://www.wnct.com/story/21013171/service-dog-could-help-child-with-r
    are-disease story from a year ago
    https://www.facebook.com/pages/Help-Jack-Jack-fights-Systemic-Mastocyt
    osis-and-Hemihypertrophy/176089742466437

    Information on diseases
    http://www.mayoclinic.org/systemic-mastocytosis/
    http://www.ncbi.nlm.nih.gov/pubmed/12787266

    Thank you so much for consideration,
    Amanda Doyon

    Contact Information:
    Mailing Address: 900A Masters Ln, Greenville NC 27834
    E-Mail: doyonamanda@gmail.com

  • Ashley

    Ashley Helena, Alabama

    My friend's daughter turned 2 months old yesterday. On January 15, 2013 she foun out she had SMA. My heart broke for their family. I have an 8 month old and the thought of my baby girl suffering from SMA is unbearable. So the fact that my friend has to watch her baby girl, Cadence, suffer, is so sad. I am just now learning of this horrific disease and I want to do all I can to help Nikki and sweet baby Cadence during this time! I'm thankful for organizations like this. God bless you and all you do!

    My friend's daughter turned 2 months old yesterday. On January 15, 2013 she foun out she had SMA. My heart broke for their family. I have an 8 month old and the thought of my baby girl suffering from SMA is unbearable. So the fact that my friend has to watch her baby girl, Cadence, suffer, is so sad. I am just now learning of this horrific disease and I want to do all I can to help Nikki and sweet baby Cadence during this time!

    I'm thankful for organizations like this. God bless you and all you do!