Daniel'sFight w/ Evans Syndrome

$18,075 of $25k goal

Raised by 98 people in 32 months
Dawn Marie Santivansky-Applegate  BORDENTOWN, NJ
This fund has been set up to help with medical and everyday expenses for our family. Daniel's dad was on unpaid family leave to be with him during this time. Daniel was in ICU at Robert Wood Johnson Childrens Hospital in critical care  May 16 to May 22nd fighting this rare disease Evans Syndrome. This is the 4th time Daniel has been hospitalized for 8 or more days at a time. We have incurred alot of medical expenses for these stays.  We never know when his counts will drop and will need to be admitted. This rare disease is so unpredictable. This last stay we almost lost Daniel to this disease and each relapse has just been getting more severe. The meds that used to work did not work this time and he had to have 9 blood tranfusions and chemotherapy to stabilize him. He is home but his RBC still continue to break down, we go weekly for treatments and counts. If his Retic goes up anymore he will have another 4 rounds of chemo. Please keep Daniel in your prayers and thank you all for your generous donations and support.
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Update 62
Posted by Dawn Marie Santivansky-Applegate
1 day ago
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.

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Update 61
Posted by Dawn Marie Santivansky-Applegate
16 days ago
. 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!
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Update 60
Posted by Dawn Marie Santivansky-Applegate
25 days ago
update 12/28/16 Today a new journey has begun for Daniel. Daniel has started his weekly home infusions of Hizentra Sub Q IGG that NIH wanted him to have weekly instead of the IVIG at CINJ monthly. The IVIG was not helping him. Weekly infusions will level and keep his IGG levels up instead of crashing after 2 weeks. We are hopeful this will help his lungs also along with the chemo he is on. Idea is to keep his levels up and the growth of nodules in his lungs will stop.
Daniel has the hyped up immune system and keeping his IGG levels up is very important. If his numbers drop he is in danger of getting lymphoma and other life threatening diseases. The doctors at NIH are keeping a close eye on his swelled lymph nodes and spleen to catch anything very early. We are scared and its very hard knowing this is possible for Daniel. We go back to NIH the end of January.
I also want to mention the blood drive January 20th 2-8 pm at the Bordentown Twp Sr. Center. Please come out and donate as Daniel relies on donations.
first Hizentra Infusion
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Update 59
Posted by Dawn Marie Santivansky-Applegate
1 month ago
Update 12/20/16. After all the fighting back and forth with the insurance company we finally have a date for his first infusion at home. This Friday we will start his Hizentra. The nurse will be here the first two times and then he will learn to do his own infusions weekly. His belly does not have enough fat so he has to use his thigh the doctor said. He is back on ensure drinks but only once a day instead of twice. I been reading up on the side effects and I am nervous. I pray he will be okay and not sick on Christmas Eve and Christmas. The doctor say he may have some swelling, pain, nauseated and headache for a couple days after treatment.
Have a Merry Christmas everyone! God Bless you all.
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Read a Previous Update
Jackie Kahn Katz Berman
30 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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$18,075 of $25k goal

Raised by 98 people in 32 months
Created May 15, 2014
Dawn Marie Santivansky-Applegate  
$50
Lauren Scheinberg Cutajar
1 day ago
DR
$50
Dara Rackley
1 day ago
$25
Anonymous
1 month ago
$100
Anonymous
2 months ago
$100
Anonymous
2 months ago
$10,550
Anonymous
6 months ago (Offline Donation)
JM
$15
Judie Mochel
7 months ago
$50
Anonymous
8 months ago
GB
$25
Gina Bassani
8 months ago

Healing prayers for Daniel

MM
$25
michele murphy
8 months ago

Thank God they found out what is wrong. Now time to heal . God Bless

Jackie Kahn Katz Berman
30 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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