Daniel'sFight w/ Evans Syndrome

$17,975 of $25k goal

Raised by 96 people in 31 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 57
Posted by Dawn Marie Santivansky-Applegate
7 days ago
Update 11/29/16 I hope everyone had a nice Thanksgiving. I want to thank those who helped with a Christmas tree and decorations. Thank you!
Daniel has decided he does not have enough physical energy with all the treatments to continue to play basketball. He will miss it. We are so proud of him for trying but it's just to much running for him.
We received the hizentra welcome package and the nurse will be starting this week with his SUBQ IGG weekly infusions at home. I am so scared of what these weekly infusions are going to cost us, but the IVIG fusions at the clinic are not holding his igg levels. So we are doing them weekly to give him more stability.
Daniel will continue to be home bound until April. With home bound instruction in our district he doesn't get a report card just a pass or fail grade. Daniel has passed the first marking period. We are so proud that he is able to keep up.

As of now we are scheduled to go back to NIH in January.
Today is Giving Tuesday and I want to thank everyone who has helped us and continues to help. We will never be able to repay all the kindness and the helped we have received. Thank you and God Bless you all.
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Update 56
Posted by Dawn Marie Santivansky-Applegate
18 days ago
Update 11/18/16 When we moved in August we had trashed everything and started new because everything that we could not wash was contaminated with mold. We trashed all our Christmas items, tree, decoration etc. We were hoping as of now to be able to buy new but with Daniel's new medicine and chemo we just cannot. We are still in need of many items such as dressers for the kids, curtains, blankets, winter clothes for them, We didn't realize starting over was going to be this difficult but we had to in order to keep Daniel safe. Daniel is in a safe environment and that is all we care about.
We moved in with only a table and Tv's that we could wash. We are slowly starting to make it home but these new meds and and weekly infusions have set us back. The travelling back and forth to Maryland (NIH) and CINJ has become a big issue with gas and tolls.
I want to thank you all for your prayers and support for Daniel. We are pushing through and it's been tough, but our family is strong and can make it through anything that comes our way.
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Update 55
Posted by Dawn Marie Santivansky-Applegate
21 days ago
Update 11/15/15 We just returned home from NIH. The genetic testing that was done in August has come back. He has a defect in Stat3 GOF (Gain of Function) which is also known as Hyperactive Immune System. Daniel is the first patient to be treated for this kind of Autoimmune disease within the NIH and United States. Everything he has gone through Evans Syndrome, ITP, hemolytic Anemia, pneumonias and most recently fungal pneumonia due to the mold in the apartment is because he has a revved up immune system. His immune system in another words is attracted to everything that he come in contact with.
With that being said, after all the testing on his lungs the past few days and the chemo he was on for 3 month suppressing his immune system the nodules in his lungs showed some improvement on the existing nodules, but did not help with suppressing new nodules from forming. So we have increase his chemo and he is on it for another 6 months. His monthly IVIG are discontinued monthly and he is starting SUB Q IGG weekly at home. I will administer it to him one day a week instead of going to the hospital monthly.
Daniel spleens continues to grow so we are having to watch for pain and discomfort.
Please continue to keep Daniel in your prayers and thank you to everyone for all your thought and prayers. Thank you for all your support. God Bless you all.
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Update 54
Posted by Dawn Marie Santivansky-Applegate
1 month ago
Update 11/4/16 : Daniel been doing really well since we moved from that moldy apartment on August 1st. We will know more when we go to NIH on November 13 to 16th. He has been on chemo since August and we are very hopeful the nodules have shrunk in his lungs. The chemo meds he is on are known to shrink nodes in the body but have not been used on the lungs before. So please keep him in your prayers that they are working. Our family have been so blessed with the support of the community and our family. Thank you.

Since Daniel has been hospitalized last February until May on and off weeks at a time I have put off blood drives. The team has contacted me today and want to host a Blood Drive in Honor of Daniel in January. I will update as they get a date for it.

We are collecting again NEW toys, books, coloring books crayons puzzles etc for a Christmas Drive for the children in the hospital on Christmas. If you would like to donate please contact me. We are collecting until November 30th.
Again thank you for all your support. God Bless you all
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 1.3K total shares
Jackie Kahn Katz Berman
28 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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$17,975 of $25k goal

Raised by 96 people in 31 months
Created May 15, 2014
Dawn Marie Santivansky-Applegate  
$25
Anonymous
6 days ago
$100
Anonymous
18 days ago
$100
Anonymous
19 days ago
$10,550
Anonymous
5 months ago (Offline Donation)
JM
$15
Judie Mochel
5 months ago
$50
Anonymous
7 months ago
GB
$25
Gina Bassani
7 months ago

Healing prayers for Daniel

MM
$25
michele murphy
7 months ago

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

TP
$50
Tom and Antonietta Potts
7 months ago
$20
Laura Trauner
7 months ago
Jackie Kahn Katz Berman
28 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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