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Save Two Year Old Noga

$15,999 of $500,000 goal

Raised by 118 people in 2 months
Created November 11, 2018

We sadly update, that yesterday evening, Noga's amazing soul left her body.
After a week long battle in intensive care she decided it was time to pass on.
We are broken and stunned by the death of our little warrior and wish to thank all of you, for walking with us through this hard time and offering your support.




Noga, our youngest daughter, has a rare genetic syndrome that seriously affects her immune system and her ability to eat. She is extremely prone to cancer and bone marrow failure, and her life expectancy of 3-10 years. And up until now, she had no cure.

But we found a way to cure her, a way to prevent those ominous predictions from coming true. Noga is now 2.5 years old. We are in a race against time, and we need your help.

 
Recent breakthroughs in the field of Gene Therapy give Noga and other children with similar conditions a chance at leading a long and healthy life. Noga can participate in a cutting-edge study in which her faulty gene will be replaced with a functioning one. Once the intervention takes place, her body will start recovering; she will no longer suffer from constant infections and the pain they inflict, and she will be able to eat and grow stronger. Unfortunately, this potentially life-saving treatment has a very high price tag of 500,000 Dollars. It is a tremendous amount, but it’s the only chance our daughter has.



Our story

Noga was born prematurely, in an emergency cesarean section. The surgeon was surprised by how small she was. Small but happy; the nurses used to say that she’s one of those rare babies who smile almost from the start. That positivity never left her, even when times were hard, even when she was rushed to the hospital in the middle of the night and had to suffer countless blood draws and other painful treatments, even when she was sick and exhausted. Up until this day, Noga remains a loving and a happy toddler, and that attitude of hers is what helped us get through the last 2.5 years and what still gives us courage to face the uncertain future which lies ahead.

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It took us about 8 Months to realize something was very wrong. The first signs were not very obvious: she was growing very slowly and had some digestion problems, but that’s often the case with babies who are born prematurely.  After a while, Noga developed severe inflammatory bowel disease and stopped eating completely. This was already a cause for alarm, because that kind of disease rarely develops so early in life.

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We sent blood samples for genome sequencing and waited for results. Two months later we received the result we dreaded most.

As it turns out, a faulty gene in Noga’s DNA is responsible for an ultra-rare genetic syndrome called Hoyeraal-Hreidarsson Syndrome. Children afflicted with this syndrome suffer from stunted growth and very weak immune system, and are prone to cancer and bone marrow failure. Noga’s dysfunctioning immune system leaves her extremely susceptible to any kind of disease. Any minor infection or cold a healthy immune system can easily overcome causes her great suffering and can result in death.

 

Our current situation

Noga is currently connected to a feeding tube 12 hours a day. She doesn’t know what food tastes like, she can’t walk around and discover the world the way other toddlers do, as she has to be constantly protected from possible infections. Her laughter is absent from the playground, she cannot freely interact with other children or go to kindergarten, pet a dog or join her sisters in the pool.

We were in and out of the hospital for most of the past 2.5 years. Hospitalizations can sometimes last months.

Keeping the family strong and cohesive under such circumstances is definitely a challenge. Our older daughters, Yasmin and Mika, are learning to cope with the constant sense of chaos, urgency and confusion in the house. We rely strongly on the help of our family and friends, and on the donations and support we receive. This helps us get through the present. But in order to have a future, it takes more.


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The cure

Possibly the hardest thing about being the parents of a sick child is being informed that there is no cure. We could not even cling to the hope of scientific development, because pharmaceutical companies have no incentive to research such rare syndromes as our daughter’s. We were repeatedly told to expect the worst.

After the initial shock has subsided and after every kind of hope was shattered, we decided to take the matter in our own hands. We began to research all we could find about the subject, read everything we could lay our hands on, and talked to any expert who was willing to return our calls. Finally we began to see the light at the end of the tunnel.

With the help of well-known experts within the emerging field of Gene Therapy, we set up our independently financed research team compiled of geneticists who are dedicated to finding the right genetic treatment customized to treat and heal Noga’s syndrome, and hopefully open the prospect of finding a cure for other children suffering from genetic diseases and who currently have no treatment options.

Gene therapy, the use of normal genes to replace defective or missing genes in the cells of people suffering from genetic diseases, has the potential for curing the disease within a single administration. Primary immunodeficiency disorders, such as Noga’s, are better suited for genetic therapy than almost any other type of genetic disease. There are hundreds of success stories of patients with these range of conditions getting better due to Gene Therapy. Highly esteemed doctors and researchers in the field of genetics and immune disease have all agreed that we are on the right track. 

 
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In summary

Time is a huge factor. Noga is about to enter the more dangerous phase of the disease. We are hoping to identify the exact gene treatment and administer it to Noga within a year. However, laboratory hours, researchers’ wages, equipment and materials are very costly. According to careful estimations we will need around 500,000 dollars to fund the project which may save our daughter’s life.

We will be more than grateful for every donation you can make to help Noga survive.


If we manage to create this cure for her, you will have not only helped her survive, but helped her and our family live a full and happy life.


Noam, Tamar, Yasmin, Mika

And Noga.


For more information about the procedure, the research, and Noga's condition, please visit our website:

savenoga.com/english

Times Of Israel published an article about us:

timesofisrael.com/to-treat-daughters-rare-genetic-disease-israeli-parents-race-to-invent-a-cure


Show your support through social media <3 Please share our cause!

Follow Noga on FB:  facebook.com/savenoga
Daily life moments on IG:  instagram.com/nogabaumatz
Updates on Twitter: twitter.com/NBaumatz
 

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+ Read More
Update 2
Posted by Gal Mor
8 days ago
   Share
Yesterday evening, Noga's amazing soul left her body.
After a week long battle in intensive care she decided it was time to pass on.
We are broken and stunned by the death of our little warrior and wish to thank all of you, for walking with us through this hard time and offering your support.
+ Read More
Update 1
Posted by Noam Baumatz
17 days ago
   Share
Dear supporters,
We have so much to tell. The past few weeks were extremely hard, but we push through.
We updated the story page of the campaign with all the links and a new video some wonderful people produced for us, and these are attached here for our donors and followers:

Noga is going through a lot and it's hard to stay in touch with everyone, but we try to post some updates on social media-
We try to post in both English and Hebrew on her Facebook page:
www.facebook.com/savenoga
Share our daily life with moments of Noga on IG:
www.instagram.com/nogabaumatz
Updates on Twitter:
www.twitter.com/NBaumatz 

Show your support through social media <3 Please share our cause!

For more information about the procedure, the research, and Noga's condition, We recently had help in translating our website to English:
www.savenoga.com/english

Times Of Israel published an article about us:
www.timesofisrael.com/to-treat-daughters-rare-genetic-disease-israeli-parents-race-to-invent-a-cure

We hope to post more encouraging updates soon. Please know that you are all in our hearts and we are so thankful for all the support.
Love,
Noga and the Baumatz family
+ Read More
Read a Previous Update

$15,999 of $500,000 goal

Raised by 118 people in 2 months
Created November 11, 2018
Funds raised will benefit:
American Committee for Lehosheet Yad (Fulfill A Dream)
Certified Charity
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Grandville, MI
EIN: 472683708
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