Hope for Shaheen, Batten (CLN2) Disease Warrior

 Please watch this brief video about Shaheen's fight and his family's struggle. Their full story is below. 

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Shaheen is our baby, he turns 5 on November 2021. He is a sweet, kind happy child, our only child and our pride and joy. He was recently diagnosed with an incurable disease: Batten Disease. What keeps us up at night is, what will happen when traditional medicines no longer work? He has been on five of them already, but soon there won't be any medicine that’s effective. Knowing that he will be having inevitable painful seizures, and that there won’t be anything that can help him and ease his pain, makes our brains and hearts ache.

 

He needs access to a new, experimental treatment, and we need help to get it for him.

 

We live in Libya. We saw a lot in Shaheen from a young age; we could tell he was smart and we had great hopes for him. He was thriving. He learned to count in multiple languages on his own from watching YouTube Kids videos by the age of 2.

 

 

 

He loved music and had perfect rhythm. It was mind blowing, he was able to follow any beat to any song, Queen songs were his favorite. We were talking about getting him a drum set, because of his great sense of rhythm.

 

 

 

 

But all of that started to change when he had his first major seizure, along with very high fever, in January 2020, two months after his 3rd Birthday. The next two years were a nightmare of misdiagnoses, false hopes, trips to doctors in Tunisia, and painful medications. All while his debilitating high fevers and frightening seizures continued to get worse.

 

 

 

 

We noticed he was getting clumsier and he was talking slower after each seizure he had. Doctors tried different medications and higher doses but he was not responding to them. And then after one powerful seizure, he woke up at the hospital he started asking for his mommy , who was holding him in her arms. He could not see. He kept yelling, “mom, mommy” while crying.

 

 

Video of Shaheen in Hospital with his Dad 

Shaheen kept crying and remained blinded for hours before he was able to see again. It was horrible, and we felt like we aged ten years in one day.

 

Finally, in Istanbul, Turkey, a doctor recognized what was happening to our boy, and confirmed the worst with genetic tests. Shaheen has Batten Disease.

 

 

Video of Shaheen Giggling and Playing 

 

 

 

Batten disease primarily affects the nervous system and is characterized by seizures and a progressive loss in motor, language, visual, and cognitive skills. Children with CLN2 disease may have late-infantile onset or later-onset of the disease. In late-infantile onset, children typically begin to show symptoms around age 4-5; most see significant decline very rapidly after onset of seizure activity and die between 6-12 years.

There is currently no cure, but there is a treatment that is showing some promising affects in medical trials. Brineura, is an enzyme replacement therapy that is critical to slowing the rapid deterioration. It would be administered bi-weekly, directly into the brain via a surgically implanted port for the rest of his life until a cure is discovered. Each Brineura dose costs $54,000, which means $1,208,000 annually.

 

 

 

 

The most terrifying feeling we get, what haunts us all the time, is not knowing what he needs because he is losing the ability to express himself and it takes several tries to understand him. Is he thirsty? Is he in pain, and what, exactly, is hurting him?

 

Since receiving the diagnosis we’ve been trying to get him anywhere that has treatment available. The only place we could get a visa for was Turkey. We left everything behind, our lives, our families, our jobs. We had to sell our house and valuables and drain the little savings we had. For months we’ve been trying to get him the Brineura treatment, but the high costs have meant only two doses were provided. But Brineura is our only hope.

 

Shaheen’s doctor in Turkey said she wouldn’t risk operating on him for only 2 doses that are not significant at all in this lifelong treatment. We need to secure more doses to be able to proceed with the Brineura treatment.

 

So far Shaheen has lost the ability to walk without support, he struggles so much with his speech and his vision is starting to deteriorate. He is unable to sing his favorite songs or follow his favorite rhythms. It is a struggle for him even to bring his hands together to clap. We don’t know how can we cope knowing the million things he will miss if he doesn’t get the treatment.

 

 

 

We have been sharing videos of Shaheen’s struggles and some of his old clips on both Instagram and Facebook, to serve as a reminder of the child he once was and how this vicious disease is affecting the quality of his life, and is treatment journey. We hope that these will inspire people to help. Please follow his story on both platforms at @hopeforshaheen.

 

 

We hope for all the kind hearts out there to support little Shaheen have a fair fighting chance in this battle he never chose.

 

 

 

 

 

Thank you,

Ruba and Shuhdi, Shaheen’s Mom & Dad

 

 

Hope for Shaheen, Batten (CLN2) Disease Warrior

 

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DISCLAIMAER PLEASE READ

The intended recipients of the donations gathered by this GoFundMe are Shuhdi Gbasa and Roba Shara, for expenses related to medical care for their son Shaheen. The Gbasa family currently resides in Turkey, which is not supported on GoFundMe. Joel Ostrow created this GoFundMe page on behalf of the Gbasa family. Joel Ostrow currently lives and created this GoFundMe page in the United States. Joel Ostrow will receive all funds received from this GoFundMe fundraiser (subject to any necessary deductions by GoFundMe for fees or other necessary expenses) into an account at J.P. Morgan Chase, an account completely separate from any personal or business-related accounts owned or managed by Joel Ostrow at Chase. All funds without exception will be wire transferred to the Gbasa family from this account on a monthly basis, on the first of the month. Joel Ostrow contacted GoFundMe prior to and after the creation of this account, and is following all procedures indicated to him, and is happy to provide any and all additional information regarding the withdrawal and transfer process upon request.