Daniel'sFight w/ STAT GOF 3

$18,345 of $25k goal

Raised by 104 people in 35 months
Dawn Marie Santivansky-Applegate  BORDENTOWN, NJ
Posting the receipt for Daniel's meds to show what we had to pay to receive them so he wouldn't miss a treatment. This is every 4 weeks. I am so happy that he was approved for the prescription copay grant that will cover the rest of co-payments until he reaches his deductible in April.
It was between this and paying our mortgage. We paid for Daniel's meds because he is what matters most. I hate that families have to choose between paying for food, housing and medicine that is needed to survive. I never thought we would be one of those families worrying but we are.
Hizentra sub q is keeping Daniel's immune system up so he doesn't get sick. They are trying to balance the chemo meds he is on that is destroying his immune system and adding this medicine is critical because of his hyper active immune system is destroying his level as soon as he get the infusion.
Daniel condition is like what you heard of before. The bubble boy. Any small cold can put him in the hospital for months. We are trying to prevent him from getting any kind of sickness by home schooling him. He is doing well. Anything can trigger his immune system to act up like before (mosquito, mold, fungal pneumonia).
Please continue to pray for Daniel. Thank you all for your support. God bless you all.
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Update 66
Posted by Dawn Marie Santivansky-Applegate
3 days ago
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Update 3/26/17 Daniel is doing okay. He is finally over the cold that he had for a few weeks. We are getting ready to leave for NIH in a couple weeks. As you all probably know Trump's proposal for cutting funding was at NIH where Daniel goes. We had sent in a request to visit the President so Daniel and I can talked to him about this. We would like to tell him how much the NIH helps Daniel and so many others out there. If it wasn't for them we still would have the wrong diagnose and Daniel would still not be getting the treatments he needs. NIH provides the medication and grants to help us afford his care. Please if you all would like to write letters to President Trump that would be fantastic. We have wrote over 30 letters and emails. Still no response from the Whitehouse or President Trump.
We are still in need of help for Daniel and our trip to NIh. Any small donation would be so appreciative. Please if you can't donate I understand, but you would be a big hep if you could share his account.
Again thank you so much and God Bless.
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Update 65
Posted by Dawn Marie Santivansky-Applegate
17 days ago
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Update 3/12/17 Daniel is a fighter. He is strong and courageous. He has been through so much that no child should have to go through. He is now fighting a cold/virus that could lead to something dangerous. He does not have the ability to fight it off. The infusions he is getting to boost his immune system are not working. He has been fighting to put on some weight but with this virus he has probably lost more . Last doctor's visit he had lost another 3 pounds. We went to a nutritionist to help with meal planning and get him back on track.
We are leaving April 16th for NIH for 4 days for additional testing and to check on his lungs. Praying they can prescribe a medicine that WILL boost his immune system. He need to get out and socialize but right now he cant. Anything he catches can just put him in danger. Any help with travel expenses would be so much appreciated. Thank you and God Bess.
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Update 64
Posted by Dawn Marie Santivansky-Applegate
1 month ago
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2/8/17 Daniel has been doing well with his infusions. Daniel goes Friday for a blood test to check his levels. We will know if then if the Hizentra is working for him. Daniel is in good spirits. Home bound is making him stir crazy and he wants to get out. Starting next week he going to go back to to youth group if his numbers are good. We go to Nih 3rd week of March to check his lungs and lung function with he upped dosage he has been on. Praying no new nodules have formed since November.
I have received some bad news on my side. I've been dealing with kidney problems since I was 11 years old. I was just diagnosed with Stage 3 Kidney disease. My left kidney is damaged and not working putting more stress on my good kidney. I will be going to Kidney Center next week to find out my options. Prayers also requested for me.
Thank you for all your support. We have been going through so much this past few weeks with diagnose. I don't know how much more our family can take. We are strong so going to keep fighting.
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Update 63
Posted by Dawn Marie Santivansky-Applegate
2 months ago
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1/27/16 Posting the receipt for Daniel's meds to show what we had to pay to receive them so he wouldn't miss a treatment. This is every 4 weeks. I am so happy that he was approved for the prescription copay grant that will cover the rest of co-payments until he reaches his deductible in April.
It was between this and paying our mortgage. We paid for Daniel's meds because he is what matters most. I hate that families have to choose between paying for food, housing and medicine that is needed to survive. I never thought we would be one of those families worrying but we are.
Hizentra sub q is keeping Daniel's immune system up so he doesn't get sick. They are trying to balance the chemo meds he is on that is destroying his immune system and adding this medicine is critical because of his hyper active immune system is destroying his level as soon as he get the infusion.
Daniel condition is like what you heard of before. The bubble boy. Any small cold can put him in the hospital for months. We are trying to prevent him from getting any kind of sickness by home schooling him. He is doing well. Anything can trigger his immune system to act up like before (mosquito, mold, fungal pneumonia).
Please continue to pray for Daniel. Thank you all for your support. God bless you all.
4 weeks supply of infusions for Daniel
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Read a Previous Update
Jackie Kahn Katz Berman
32 months ago

This will be the cause of the day on Thursday on the Tommy G Show. We are the 3-6PM show on 1450WCTC. I am also mentioning the blood drive. Good luck, you are in our prayers.

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$18,345 of $25k goal

Raised by 104 people in 35 months
Created May 15, 2014
Dawn Marie Santivansky-Applegate  
A
$50
annonymous
3 days ago(Offline Donation)
AH
$50
Adriane & Joe Horan
15 days ago
$25
Martha Matisa
27 days ago
MM
$25
Mike Matisa
28 days ago
BK
$100
Bill Komendat
28 days ago
$20
Anonymous
2 months ago
$50
Lauren Scheinberg Cutajar
2 months ago
DR
$50
Dara Rackley
2 months ago
$25
Anonymous
4 months ago
$100
Anonymous
4 months ago
Jackie Kahn Katz Berman
32 months ago

This will be the cause of the day on Thursday on the Tommy G Show. We are the 3-6PM show on 1450WCTC. I am also mentioning the blood drive. Good luck, you are in our prayers.

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