Zoey's Medical Fund

$10,180 of $10,000 goal

Raised by 106 people in 25 months
Monica Toker
on behalf of Ariane Labung
 SECAUCUS, NJ
Our good friends Don & Ariane, have 2 beautiful little girls, Charlie & Zoey. This family struggles everyday and very few people know.  Zoey has been diagnosed with a blood disorder called severe chronic neutropenia. 

Neutropenia is when the body has an abnormally low count of neutrophils (a component of white blood cells). A healthy baby's neutrophil count 1500+, Zoey's neutrophil count hovers just under 300, making her case very severe.

There is no cure for neutropenia, only treatment. One of these treatments are daily neupogen shots that trigger your bone marrow to produce more neutrophils. These shots are not covered by insurance and cost $1000 per vile.

Anytime Zoey gets a fever that is 100.4+ she has to immediately be admitted to the hospital for 3 days since she does not have enough neutrophils to fight off any bacterial infections. She is then hooked up to the IV with antibiotics for 2-3 days, while they run various tests on her before she can go home.

Any parent with a toddler knows how hard this can be because a virus, like the common cold or ear infection and even teething can produce a fever over 100.4, but for their family it is a medical emergency and her ticket to the ER.

We are hoping that with this money raised, we can help relieve the daily stress of medical bills and possible give them opportunities to experiment with new tests. There are genetic tests out there that will help rule out which types of neutropenia Zoey has, and the only thing stopping them from having them done is cost. 

Since Zoey was born, they have visited 15 different doctors and 3 children's hospitals to give answers with 6 weeks of constant blood draws for testing and 5 trips to the ER with 1 hospital admission before her first birthday.

It has been tough, but Zoey proves to be even tougher and so does her support system of Mom, Dad & Sister. Any donation or prayer is greatly appreciated. This family tries to fill their days with as much love and light as possible, even during tough times. We hope that as their friends & family we can come together to bring them more light.

https://www.youtube.com/watch?v=OVdNxKT2F0Q
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Hi everyone! Ariane wanted to provide you with an update on Zoey. We are so close to making our goal! Thanks again for all the love and support.

It has been 9 months since Zoey's last vaccine. Because of her extreme reactions to them (temp of 100.3-101.9 that lasts for at least a week) her team of doctors have decided to pause them. Her last ER visit we learned that her bone marrow CAN make neutrophil, so in the neutropenia world of production vs. destruction, her problem is that her body destroys her good cells, but can at least produce them (when it wants to).

Bc of this, it has given us a little bit of courage to start vaccines again and to widen our "bubble." We scheduled one that her hematologist picked and her pediatrician followed protocol Saturday morning. Fast forward to Tuesday, and she has decreased her eating/drinking and continued to have a fever that ranged from 100.7-101.3.


I tried to hold off calling her hematologist as long as I could, but I knew we were due to go in as soon as she hit 101. Tylenol didn't help and I knew we needed to get her numbers.

Although, I knew in the back of my mind we would be having an ER visit, it still didn't help that it was midnight by the time we drove to New Brunswick. Dropping Charlie off to my moms wasn't easy, as she kept asking us why we were leaving her and why she couldn't come.

We were already emotionally drained and exhausted before we even went thru the doors. Our good friend was working that night and stayed with us for a little while which helped, as I prodded her with my questions. I'm not sure if she knows it, but her sitting on the chair next to me, gave me strength and caffeine to keep going. I don't know if people realize that just by being there helps. In a make or break situation, it def makes us.

As far as ER doctors go, they are never easy to deal with. But we appreciate them being there no matter what time of day, and their sincere dedication to help. It's just that this whole journey isn't easy. Things never go the way you planned, but along the way if you let it, you will find great support.

So, they checked her vitals and we remind them of the dos and donts for neutropenia patients, it isn't a well known medical condition and we have grown to accustomed to educating the ER staff.

We docked admission as her counts went up as high as 2500. The highest it has ever ever been. She is the classic case of autoimmune neutropenia, and this is the best case scenario. Only her bone marrow can give us our "get out of jail card" or in this case, "get out of the ER and go home card." We are two for two. The first two times we were admitted, and the past two times we were sent home. It was exhausting but it was still the best case scenario.

Don and I don't get our hopes up when it comes to her numbers. We always pack our bags when we go bc we never expect her counts to be anything over 300. But it really seems like her bone marrow and immune system is slowly learning. Although she has tested negative for the antibody testing, we are still doing everything we can to push her to build her immune system.. Especially before the age she has to be in a school setting.

We do not know if we are doing the right thing, what I do know is that putting Zoey inside a bubble will not make things easier for her.

Our goal as parents is to give our girls strong wings to fly.

We make a conscious effort not to handicap them by doing everything for them, and making their lives easy.. We are honest with them about what we can and can't afford, we push them to be independent even if it means that Charlie walks into school with her underpants backwards, we still celebrate the fact that she can do it herself.

Thank you again for all the support everyone. I've said this before but I will say it again, it's def what keeps Don and I going. Knowing that our friends and family behind us keeps us afloat despite the setbacks.

We are beyond thankful. Each one of you are answered prayers to our family.

Thank YOU!!!
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WOW! We reached our goal of $7000! Don and Ariane are beyond grateful for all the love and support they have received during this tough time.

Because we know that they have more support then they could ever have imagined- we decided to increase the goal and soon we will be holding a fundraising event to continue supporting them.

Please continue to share and donate- every little bit helps!
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Hi Everyone! We want to thank everyone for their love and support for Zoey and her family! We are half way to our goal!!! Thank you SO much to everyone who has shared, donated and prayed for Zoey. I know that Don and Ariane and forever grateful and overwhelmed with the love and support they have around them.

We are getting closer and closer to reaching the final goal. Please continue to share....every little bit helps! Even $5 :)
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$10,180 of $10,000 goal

Raised by 106 people in 25 months
Created July 10, 2016
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$500
Verano Family
24 months ago

Much love and support to you all from Monina, Jacqueline & Zofia.

$25
Anonymous
24 months ago
$100
Edith Rosales
24 months ago
1
1

Praying for a cure for neutropenia.

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