Daniel'sFight w/ STAT GOF 3

$18,095 of $25k goal

Raised by 99 people in 33 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.
+ Read More
Help spread the word!
 1.6K total shares
Update 64
Posted by Dawn Marie Santivansky-Applegate
11 days ago
   Share
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.
+ Read More
Update 63
Posted by Dawn Marie Santivansky-Applegate
23 days ago
   Share
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
+ Read More
Update 62
Posted by Dawn Marie Santivansky-Applegate
29 days ago
   Share
1/21/17 New Year has begun. Time to meet the deductible for Daniel. Daniel has finished his first four week treatment of Hizentra. We were lucky because we had met his deductible last year so it did not cost a penny. We just ordered his next 4 week treatment to start this Friday. Our portion is 1,966.17 we have to pay! Yes, that is what we have to pay every 4 weeks!!! So what I was told we must pay that up to April and his deductible for prescriptions will be met.
We applied for the financial assistance through Hizentra which is a 4 thousand grant that we don't pay back. KICKER Daniel does not qualify because he is 14 not 16 years old. Can you freakin believe it goes by age. The medicine is only recommended for 16 years and up so the grants can only be used in older kids.
I dont know how we are going to pay for this every 4 weeks until April. Calling NIH on Monday and see if they can help with the co payment since they are the ones puting him on the infusion. We get his chemo meds through them for free since he is a patient there. I am hoping we can get this covered too.
We need to come up with this money by Weds so Daniel doesnt miss his weekly treatments. As long as we pay 760. they will send his infusions on time and start a payment plan weekly and just keep adding to it until the deductible is met.
Thank you to everyone for your support of Daniel. God Bless you all.

+ Read More
Update 61
Posted by Dawn Marie Santivansky-Applegate
1 month ago
   Share
. Daniel is tolorating his Hizentra infusions. He gets them weekly and is sore the next day and weak. Daniel goes to CINJ for bloodwork next week to see if this med is holding his igg levels steady. We dont have to go back to NIH next week because his doctors here will monitor his levels and relay it back to his doctors at NIH. So our next visit to NIH will be in March as long as his levels remain stable. Please come out January 20th for the Blood Drive. Daniel relies on donors for his treatments. We must keep the blood banks full!
LikeShow more reactionsCommentShare
+ Read More
Help spread the word!
 1.6K total shares
Read a Previous Update
Jackie Kahn Katz Berman
31 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.

+ Read More

$18,095 of $25k goal

Raised by 99 people in 33 months
Created May 15, 2014
Dawn Marie Santivansky-Applegate  
$20
Anonymous
26 days ago
$50
Lauren Scheinberg Cutajar
29 days ago
DR
$50
Dara Rackley
29 days ago
$25
Anonymous
2 months ago
$100
Anonymous
3 months ago
$100
Anonymous
3 months ago
$10,550
Anonymous
7 months ago (Offline Donation)
JM
$15
Judie Mochel
8 months ago
$50
Anonymous
9 months ago
GB
$25
Gina Bassani
9 months ago

Healing prayers for Daniel

Jackie Kahn Katz Berman
31 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.

+ Read More
or
Or, use your email…
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now

Pledge now, give later.

Pledge Now
You won't be charged for this pledge. We'll let Dawn know that you have pledged support.
Thank you!
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.