Today as I write this on Jawad’s fourth birthday, I have only one wish, that Jawad “receives his treatment.”
When Jawad was 1 year and 11 months old, he had fever. At first, we thought it was just a normal flu, so we took him to the hospital to make sure everything was okay.
A few days later, we were told that his liver enzymes were extremely high. That was the beginning of our fear and anxiety then we started doing more tests.
We discovered that his muscle enzymes were also extremely elevated, indicating a problem with his muscles.
The doctors requested a genetic test, which was sent to Germany. We were told we had to wait two and a half months for the results. Those two and a half months felt like an eternity, time had completely stopped.
After all that waiting, we were told that the test had to be repeated.
And once again, we had to wait another two and a half months.
After months of waiting, we finally learned the truth that changed our lives…
Jawad was diagnosed with Duchenne Muscular Dystrophy (DMD).
It is a genetic disease that causes progressive weakness of the muscles. Children can lose the ability to walk at a young age and over time, the muscles of the arms and the rest of the body also become affected until the heart and respiratory muscles stops, causing death at early twenties.
It was one of the hardest moments of our lives.
After almost 1 month, our doctor told us that Jawad has a chance to receive treatment called Elevidys that may be suitable for his condition. But the cost of the treatment is approximately $2.8 million, an amount far beyond what we can afford.
At that moment, our tears of sadness turned into tears of joy…
Our tears of helplessness turned into tears of hope.
All we heard that day was “Jawad can be treated”.
We didn't think about the number at that moment… We only thought about Jawad. ❤️
But the cost of the treatment is approximately $2.8 million, an amount far beyond what we can afford.
Today, on Jawad’s fourth birthday, our only wish is to help him reach his treatment.
Your donation, no matter how small and simply sharing Jawad’s story, could help him access his treatment and could give him a chance to a new life.
We dream of seeing Jawad have a normal childhood…
Running, playing, laughing, growing up and dreaming about his future just like any other child.
And we dream that one day, he will become a source of hope for other children living with the same disease.
We wish health and safety to every child
and to our son, Jawad. ❤️
Please help us share Jawad’s story with as many people as possible.
Even sharing his story could be the reason his life changes.
عم أكتب بيوم عيد ميلاد جواد الرابع وبتمنى تكون هديته هالسنة "تلقي العلاج"
بعمر السنة و11 شهر جواد طلعت حرارته كان رشح عادي, أخدناه عالمستشفى وعملوله فحوصات بعد كم يوم خبرونا إنه أونزيمات الكبد مرتفعة جدا" وهون بلش القلق من إنه جواد عنده شي خطير, توسعنا بالتحاليل أكتر وخبرونا إنه أونزيمات العضل مرتفعة كتير وبالتالي عنده مشكلة بالعضل وعملناله فحص جيني وبعتناه على ألمانيا وكان لازم ننطر شهرين ونص لتطلع النتيجة, الوقت ما كان عم يمرق والدني كانت واقفة بنظرنا بعد النطرة خبرونا إنه لازم نعيد الفحص وكنا مضطرين ننطر شهرين ونص مرة تانية.
بعد طول إنتظار أجت النتيجة إنه جواد مصاب بمرض ضمور العضل الدوشيني وهو مرض جيني بيضعف عضلات الجسم وبيتسبب بالعجز عن المشي بسن مبكر ومن بعدها العجز عن تحريك الإيدين ومع الوقت العجز عن تحريك أي جزء من الجسم
وغالبا" بيصيب عضلة القلب بأوائل العشرين وبيؤدي للوفاة.
يوم خبرنا الطبيب إنه جواد عنده فرصة يتعالج بجرعة دوا إسمه (إيليفيديز) تحولت دموع الحزن لدموع فرح ودموع الضعف والعجز لدموع قوة وأمل, وخبرنا الطبيب إنه تكلفة العلاج ما يقارب 2.8 مليون دولار, طبعا" من الفرحة كل يلي سمعناه وقتها إنه بيتعالج وما فكرنا بالرقم.
اليوم من خلال دعمكم وتبرعاتكم ولو حتى بمبلغ قليل ونشركم لحالة جواد ممكن تكونوا سبب بإنه جواد يحصل عحياة جديدة ويعيش طفولة طبيعية يركض متل (سونيك) ويلعب ويسبح كتير لأنها هوايته المفضلة, ونحلم بمستقبل حلو إله متله ويكون هو كمان أمل لغيره من الولاد المصابين بنفس المرض.
بتمنى الصحة والسلامة للكل ولإبنا جواد
May Allah heal him and grant him health and safety. God willing, this difficult period will be the end of his suffering and he’ll return healthier and stronger than before. May Allah protect him for you, reassure your hearts, and give you patience and strength.
Anonymous
Donated 80 $
Allah yehmi
Amir Ishaque
Donated 5 $
Get well soon
Anonymous
Donated 150 $
salemto :)
Anonymous
Donated 10 $
Best of luck.
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Medhat Abou diab
Donated 100 $
Alla yhmik hbb
Mou. Issa
Donated 220 $
Inchallah betchufi chab add l deniyé
Anonymous
Donated 100 $
May Allah give him all Shefaa 🤲🏼
Anonymous
Donated 100 $
May Allah heal him and grant him health and safety. God willing, this difficult period will be the end of his suffering and he’ll return healthier and stronger than before. May Allah protect him for you, reassure your hearts, and give you patience and strength.
Anonymous
Donated 80 $
Allah yehmi
Amir Ishaque
Donated 5 $
Get well soon
Anonymous
Donated 150 $
salemto :)
Anonymous
Donated 10 $
Best of luck.