The extended deadline submission for The Taking Focus BIPOC grant will finally come to a close on March 18th. This photo grant will go to a BIPOC photographer whose work focuses on racial injustice in the United States. As a documentary photographer you may be telling a personal story, you may be telling the story of your community. This is an opportunity to not only share your voice, but an opportunity to be a part of the change. The TF Giving Back Component is what helps make that possible. Never think that your work can not create change. Your work will always have an effect on someone.
Here are the submission details for our $2,500 BIPOC Grant
Sharing two educational pieces. CNN's documentary with Dr. Sanjay Gupta. Weed features Charlotte Figi, the little girl that Charlotte's Web is named after. Charlotte was born with Dravet Syndrome, the same condition that Bruno was was born with.
Weed 2 is CNN's second documentary with Dr. Sanjay Gupta. If you pay close attention you will see Dr. Gupta speaking with Jacel as he holds Bruno.
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Taking Focus is asking for your immediate assistance. Bruno Stillo is now off of the waiting list and on his way to Colorado today to receive Charlotte's Web. Jacel has great hopes that Charlotte's Web will have a positive impact on Bruno. Jacel is in need of financial assistance. She is unsure of how she will be able to manage.
Last year when Jacel left for Colorado to get Bruno on the waiting list, she befriended someone that has welcomed her and Bruno into their home for the week.
Jacel and Bruno are in need of gas, food, and the yet-to-be determined cost of Charlotte's Web. Funds are also in needed for future trips back to Colorado.
Bruno having a seizure. B & V Thera-Pro Associates, Miami, FL
Back in January, at the time of the CNN interview, Bruno would have up to 300 seizures. At this time Bruno has over 300 seizures a day. Bruno was recently diagnosed with induced Lupus caused by one of the seizure medications he was prescribed. He has now been taken off of Depakote, but only time will tell if that medication was the cause. Withdraw from the medication has increased the amount of seizures he is having.
Bruno's condition has left him unable to walk on his own and unable to talk. It is yet- to- be determined if he has suffered permanent damage to his brain due to the extensive amount of seizures.
After having tried everything possible, last year doctors decided to try Potassium Bromide- a veterinary drug.
Here is a list of the medications Bruno is on:
Depakote- for partial seizures (just stopped taking due to being recently diagnosed with induced Lupus)
Keppra- antiepileptic drug
Potassium Bromide- antiepileptic medication for dogs
Levocarnitine- treats low blood levels of carnitine to help protect the liver.
Clonazepam- (for clusters of seizures)
Diastat (for seizures lasting over 3 min)
Bruno always smiling. B & V Thera-Pro Associates, Miami, FL
As a parent wouldn't you do anything to save your child?
After having tried all medications, this is the last option for Bruno and many others.
According to Jacel, "My son is still having hundreds of seizures in a day. He can't eat a meal, or play with a toy without a seizure interrupting. He has tried all other cocktails of seizure meds, has tried ketogenic diet. Bruno is now 3 years old and has never experienced a day without a seizure.
Medical marijuana does not cause the horrific side effects that the FDA approved drugs have caused. Why should he experience horrible side effects such as drug induced lupus, being lethargic, regression, low white cell count, and recurrent thrush. Due to the fact that he is non verbal, how would I even know about that he is feeling dizziness or having suicidal thoughts, etc. Other patients experience all this too."
I personally have seen how medical marijuana is helping other patients. Why shouldn't my son have a chance too! Why should a politician be the person to decide what is best for my child and other children that are suffering, it should be my choice not a politician who's never seen the hundreds of seizures my son experiences in a day! Seizures in Dravet syndrome could last for hours. A seizure can take him away in minutes. I shouldn't have to wait. It's a little life I'm trying to save. It's my son's life at risk!"
Jacel hugging her son Bruno at home. Miami, FL
What you need to understand in regards to Amendment 2.
According to Jacel, "The whole plant is needed. So many different parts of the plant can treat so many illnesses. Studies in patients given high CBD, low THC have shown to help with seizures, but the ratio is different for every patient which is why the whole plant is needed. You can't restrict a patient on using only one dose when not all patients are the same."
All of this means that the genetic makeup of each person is different. The ratio becomes different for each individual. Amendment 2 is vital.
Bruno laying on his and Jacel's bed at home in Miami, FL
Please consider donating at this time. We can make a difference together!
Thank you,
Our Taking Focus Team
Trinity Presbyterian Church, Palm Coast, FL
Taking Focus would like to take a moment to personally thank Trinity Presbyterian Church in Palm Coast, FL, whose recent donation assisted the Vanhoutte Family's vehicle in being repaired.
Warm regards!