Help Adam Breathe and Feed

Deutsche Version unten

English:
We were thrilled and excited to meet Adam the day that he was born. However, excitement quickly changed to fear when we noticed that Adam was having a hard time breathing. The doctors quickly took him away from us to try to clear his airways, so maybe he could breathe better. The tube would not go through to his stomach and we knew there was something wrong. For two hours we waited while Adam was in another department with doctors. When the doctors came back they told us that Adam has a condition called VACTERL association. 

From that moment on, our mission has been to finish his treatment so he can live a healthy life. In his short life, Adam has already had three major surgeries and has had five minor operations. He has had anesthesia ten times. After that we found out that Adam has Laryngeal Cleft type three. This is a very rare condition, in which there is a cleft between the breathing and feeding pipe. Babies with this condition have feeding difficulties and false passage of food, liquids and saliva into the lungs, which causes recurrent episodes of pneumonia. 

The treatment is minimally invasive, but it is only provided in a few hospitals worldwide. We have been fortunate to connect with the best surgeon in the world who treats this condition endoscopically. Dr. Kashore Sandu is the head of the airway unit of Lausanne University Hospital CHUV in Switzerland. He has already accepted Adam’s cause, and is prepared to do his operation. This operation is needed immediately because without it there is risk of suffocation from liquids entering Adam’s breathing pipe and lungs. If everything goes well, Adam will be able to return home two weeks after surgery. 

Our public insurance company here are not willing to pay for this minor invasive treatment. They would only pay for a treatment which is provided by a national hospital.


The alternative treatment  is to make Tracheotomy ( a breathing hole from the neck). A Gastrostomy ( a feeding pipe directly in the stomach), and then access the cleft by making an incision in the neck. Then after about 8 months of suffering for Adam then they will close the Trachostoma and the Gastrostoma. 


Even if everything went as planned for this alternative there are still certain results which cannot be ignored:

-Gastrostoma will affect the wall of the stomach and cause ulcers.
- Incision in the neck will damage the nerve system, which might cause vocal cord paralysis which will prevent Adam from speaking and breathing and he will need to use Tracheostoma forever.
-Tracheostoma will prevent speech development, which most probably will never be recovered.
-Open incision will disturb laryngeal structure which makes a second possible surgical intervention much more difficult.
-Having unnecessary scare on Adam Neck for the rest of his life. Which will make him under pressure from the community and he will never have the chance to live a normal life.
Why is all the above needed? Well, it is not. The Airway unit in Switzerland is specialized with laryngeal Cleft and they can do it endoscopically from the mouth without the need of Tracheotomy or Gastrostomy or an open incision.It will all be prevented when we go with the minor invasive approach in Switzerland.


Please help our decision to give the best for Adam. The insurance did fail us, but we know you will not. Sharing the story and donating small amounts from many people will save Adam life.

We have spent a long time thinking about whether or not to go public with this, and for many reasons have decided to share our story. Adam’s life saving medical treatment is expensive and we need assistance gathering the funds to be able to pay for his surgery.

Adam is a lovely happy boy who always has a smile on his face, despite his breathing and feeding difficulties. Please help us gather the medical treatment cost so Adam can see the bright side of this life.

To familiarize yourself about the condition please click here 


Please also check the Airway Unit foundation to see how you can help 

We also need your help to share the story, so please visit the Facebook page and share the story
for Instagram please check:https://www.instagram.com/adam.aldirawi/ 


About Tip:
We had some questions about this: the GoFundMe site provides the option of giving a tip during the donation process. The tip goes to GoFundMe exclusively, not to Adam’s treatment. It supports them in providing their service. That is on top of their processing fee of 2.9% taken on the final collected amount. You can choose an amount, or set “Other amount” to 0.00 if you don’t want to tip at all.
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if you feel more comfortable using PayPal to donate, then here is the link for PayPal donation for Adam.

Paypal :  https://paypal.me/pools/c/8m03rrNqCi

All the donations to PayPal or using bank transfer or by hand are added here as offline donation, to  keep the donated amount track in one place, to make it easier for all of us to track.

Thank you

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Deutsch
Wir waren begeistert und aufgeregt, Adam am Tag seiner Geburt kennenzulernen. Die Aufregung änderte sich jedoch schnell in Angst, als wir bemerkten, dass Adam Schwierigkeiten beim Atmen hatte. Die Ärzte nahmen ihn schnell von uns weg, um zu versuchen, seine Atemwege freizugeben, damit er vielleicht besser atmen konnte. Der Schlauch ging nicht durch seinen Magen und wir wussten, dass etwas nicht stimmte. Wir warteten zwei Stunden, während Adam in einer anderen Abteilung mit Ärzten war. Als die Ärzte zurückkamen, erzählten sie uns, dass Adam eine Krankheit heißt VACTERL hat.

Von diesem Moment war unsere Mission seine Behandlung fertig zu machen, damit er ein gesundes Leben führen kann. In seinem kurzen Leben hatte Adam bereits drei größere Operationen und fünf kleinere. Er war zehnmal anästhesiert. Danach fanden wir heraus, dass Adam Larynxspalte Typ drei hat. Dies ist eine sehr seltene Erkrankung, bei der sich zwischen Atem- und Zufuhrleitung ein Spalt befindet. Babys mit dieser Erkrankung haben Ernährungsschwierigkeiten und eine falsche Passage von Nahrungsmitteln, Flüssigkeiten und Speichel in die Lunge, was zu wiederkehrenden Lungenentzündungen führt.

Die Behandlung ist minimalinvasiv, wird aber weltweit nur in wenigen Krankenhäusern durchgeführt. Wir hatten das Glück, mit dem besten Chirurgen der Welt Kontakt aufzunehmen, der diesen Zustand endoskopisch behandelt. Dr. Kashore Sandu ist Chef der Atemwegs Unit des CHUV der Universität Lausanne in der Schweiz. Er ist bereit, seine Operation durchzuführen. Diese Operation ist sofort erforderlich, da sonst die Gefahr des Erstickens von Flüssigkeiten besteht, die in Adams Luftröhre und in die Lunge gelangen. Wenn alles gut geht, kann Adam zwei Wochen nach der Operation nach Hause zurück gehen.

Wir haben lange darüber nachgedacht, ob wir damit an die Öffentlichkeit gehen sollen, und aus vielen Gründen beschlossen, unsere Geschichte zu teilen. Adams lebensrettende medizinische Behandlung ist teuer und wir brauchen Unterstützung, um seine Operation bezahlen zu können. Adam braucht Ihre Hilfe. Wir bitten Sie, seine Geschichte zu teilen, damit Adam die Möglichkeit hat, ein gesundes, glückliches Leben zu führen.

CHUV Airway Unit 

Airway Unit foundation 

Facebook page 

Instagram 

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Wenn Sie sich mit PayPal wohler fühlen, um zu spenden, finden Sie hier den Link für die PayPal-Spende für Adam.

Paypal: https://paypal.me/pools/c/8m03rrNqCi

Alle Spenden an PayPal oder per Banküberweisung oder per Hand werden hier als Offline-Spende hinzugefügt, um den gespendeten Betrag an einem Ort zu verfolgen und die Nachverfolgung für uns alle zu vereinfachen.


Danke euch und Ihnen allen