Hakim- Battens Disease
Donation protected
In 2016, my brother Hakim was diagnosed with an extremely rare and fatal disease called Battens Disease.
Hakim was born as a normal and healthy baby in 2012. We first suspected something was wrong when he would stand directly in front of the TV to watch cartoons. He was losing his vision rapidly and the doctors could not figure out why, until they did a blood test. We learned Hakim suffers from a rare genetic disease called Battens disease. They told us Hakim will one day be unable to walk, talk, eat/use the bathroom on his own. He has already completely lost his vision. Not only that, his health will decline and his memory will slowly start to fade. Those that suffer from this disease generally do not live past their late teens/early twenties and when they do, they are cognitively about the age of seven.
Due to this disease, Hakim will suffer from seizures and hallucinations his entire life. He currently takes 8 pills a day and a liquid medication twice a day to control them. These medications will not stop them. They are only controlling them for the mean time as he is destined to have more seizures and hallucinations in the future which will result in higher doses of medication.
Hakim is still a fun and silly boy with many dreams for the future. His current dream is to become a scientist so he can build a laser gun.He also cannot wait to get his driver's license! He doesn't know that the disease he has won't allow him to have a future. He doesn't know that he will one day forget who we are, and who he is.
Because this disease is so rare, there isn't enough funding for a cure. However, there are clinical trials going on that have been proven to slow down the symptoms such as losing the ability to walk, talk, eat, and early death.
There is a clinical trial going on in Columbus Ohio, and our goal is to get Hakim on this trial so when a cure does com along, he is alive to receive it. Also so he can be with those that love him dearly for as long as possible
Hakim was born as a normal and healthy baby in 2012. We first suspected something was wrong when he would stand directly in front of the TV to watch cartoons. He was losing his vision rapidly and the doctors could not figure out why, until they did a blood test. We learned Hakim suffers from a rare genetic disease called Battens disease. They told us Hakim will one day be unable to walk, talk, eat/use the bathroom on his own. He has already completely lost his vision. Not only that, his health will decline and his memory will slowly start to fade. Those that suffer from this disease generally do not live past their late teens/early twenties and when they do, they are cognitively about the age of seven.
Due to this disease, Hakim will suffer from seizures and hallucinations his entire life. He currently takes 8 pills a day and a liquid medication twice a day to control them. These medications will not stop them. They are only controlling them for the mean time as he is destined to have more seizures and hallucinations in the future which will result in higher doses of medication.
Hakim is still a fun and silly boy with many dreams for the future. His current dream is to become a scientist so he can build a laser gun.He also cannot wait to get his driver's license! He doesn't know that the disease he has won't allow him to have a future. He doesn't know that he will one day forget who we are, and who he is.
Because this disease is so rare, there isn't enough funding for a cure. However, there are clinical trials going on that have been proven to slow down the symptoms such as losing the ability to walk, talk, eat, and early death.
There is a clinical trial going on in Columbus Ohio, and our goal is to get Hakim on this trial so when a cure does com along, he is alive to receive it. Also so he can be with those that love him dearly for as long as possible
Organizer
Hakim Z
Organizer
Stockton, CA