Daniel'sFight w/ Evans Syndrome

$17,750 of $25k goal

Raised by 93 people in 27 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.
+ Read More
Update 52
8 days ago
8/16/16
What we found out in the wrap up meeting.
Daniel has been misdiagnosed the past 5 years. Daniel does not have Evans Syndrome, ALPS, CVID.
The reason Daniel got fungal pneumonia because of the mold and the rest of us only asthma is because he has a Hyperactive Immune System and it attacked him differently. Also because the retuximab killed off his t and b cells which is why he has no immune system igg, iga.
Treatment is cellcept to shrink the nodules in his lungs. Ivig every 3 weeks to boost his immune system. Every 3 months back to NIH for ctscans of his lungs. He has 61 percent lung function if this med does not shrink the nodules and they keep growing he will need a lung transplant in the future. Please pray this treatment works. We were advised not to go back to CINJ because they are not equipped or knowledgable in Daniel's diagnose and he will continue to be treated through NIH from now on. Still waiting on genetic testing. That could be weeks before we know anything. Thank you for your support through all this.
Ivig fusion
+ Read More
Update 51
3 months ago
1
1
Update 4/30/16. Finally have confirmation so I may post. Daniel and the rest of the family are dealing with illnesses from black toxic mold Stachybotrys chartarum: The Toxic Indoor Mold. The family is staying in a motel until remidiation is totally complete and another air quality test perfomed to ensure it is safe to return.
Daniel and I will be staying in the hospital. Daniel is suffering the worse. He is down to 116 pounds cannit eat or drink. He is on IV nutrients. Still very very ill. The nihl is looking at Daniels case and as soon as they tell us we are going to Maryland as in patient to get Daniel better. We are looking to get out asap. Daniel refuses to go back the place. We all do. We will be trashing all belongings and starting over fresh as with the toxic mold is airborne so everything must go.
All of this could have been prevented if the tenants above us didnt have an illegal washing machine and management took care if it years ago when we first reported it. In the years they kept flooding our bathroom. This past November we noticed mold growing. Still nothing done until Infectious Diesease contacted the health dept on our behalf.
Daniels dad is out on family leave and not getting paid. He needs to be with the kids before and after school for the bus.
The infectious disease team is testing our whole family on Monday full work up to tie all our illnesses that we been suffering with since January when Daniel first got sick. Jessica and Matt asthma and Jrs. Hashimotos disease and swelled nodes.
Please keep our family in your prayers.
+ Read More
Update 50
4 months ago
They removed a wedge of his lung and 3 nodes. He has a chest tube to help drain his lung and keep it inflated. He is on oxygen to help him breathe easier. This heartbreaking seeing my baby like this. I pray no other child has to go through what he has endured thd past 3 months. He is my hero! Please keep the prayers coming. A long road ahead.
Thumbs up.
+ Read More
Update 49
4 months ago
Update 4/21/16. Today has been a very emotional and hard day. I am asking fir some major prayers for Daniel. Daniel is having major surgery tomorrow. OPEN WEDGE LUNG REMOVAL. They did everything they could to avoid this surgery but he js not getting better. This is the last option. Please pray and again at 12 tomorrow. Pray for the surgeon steady hands and he protects my baby.
Took my other two kids to the doctor today. Jessica has asthma. She is going to an allergist to determine if it is mold related. My son Christopher was diagnosed with Hashimotos Disease last month. Also could be from mold. Today he found a lump under his arm. Going to be tested. All of these could be result from the mold. Testing is being done to confirm. Daniel, Jessica and Christopher all became sick at the same time. It is no coincidence. We have all been dealing with health issues the past 3 months. My only son who stays most of the time at his girlfriends place is not sick at all. The rest of us are.
I am so pissed off right now. There is going to be major lawsuit going on. Daniel and my family do not deserve the total lack of responsibility that the management is giving us. Please pray for all of us.
+ Read More
Read a Previous Update
Help spread the word!
 1.3K total shares
Jackie Kahn Katz Berman
25 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

$17,750 of $25k goal

Raised by 93 people in 27 months
Created May 15, 2014
Dawn Marie Santivansky-Applegate     Medical   BORDENTOWN, NJ
$10,550
Anonymous
1 month ago (Offline Donation)
JM
$15
Judie Mochel
2 months ago
$50
Anonymous
3 months ago
GB
$25
Gina Bassani
3 months ago

Healing prayers for Daniel

+ Read More
MM
$25
michele murphy
3 months ago

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

+ Read More
TP
$50
Tom and Antonietta Potts
3 months ago
$20
Laura Trauner
4 months ago
SD
$50
Steve Demkowicz
4 months ago

GET WELL SOON CAPTAIN!

+ Read More
JH
$25
Jill Hansen
4 months ago
$200
Anonymous
4 months ago (Offline Donation)
Jackie Kahn Katz Berman
25 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
  Use My Facebook Account
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
 Share on Facebook