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Khloe

<div>I am raising <strong>money to help pay for my son’s cancer journey</strong>. We are having to relocate to Florida for approximately 3 months while he goes through an extensive treatment to find a chemo and/or vaccine to boost his quality of life.

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<div>The University of Florida will be putting Mark in a trial that uses his own tumor to learn to fight his cancer. <strong>If God is willing, we can find a vaccine to help him live a very long life.</strong> Without this trial, we don’t have a lot of long-term survival.

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Support Mark's Cancer Treatment Journey

<div><strong>Paxton's Story: A Rare Genetic Battle</strong>
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<div>Our son Paxton, recently diagnosed with an ultra-rare genetic mutation on the CLCN6 gene, faces immense challenges including Autism Spectrum Disorder, severe epilepsy, hypotonia, and poor motor coordination. <strong>This mutation is neurodegenerative, meaning time is critical.</strong>
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<div><strong>The Urgency of Paxton's Condition</strong>
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<div>Paxton is one of only a handful of known cases worldwide, and currently, no research exists for a gene therapy due to the small patient population. <strong>However, we have a unique opportunity to develop a life-saving treatment for Paxton at the University of Massachusetts' Horae Gene Therapy Center.</strong>
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<div><strong>Why We Need Your Help</strong>
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<div>The scientists will create a custom gene therapy using specialized viruses called Adeno-Associated Viruses (AAV). <strong>The entire process, including studying the mutation in laboratory models, developing and testing the therapy, and administering it to Paxton, will take approximately three years and cost $1.5 million.</strong>
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<div><strong>The Science Behind the Therapy</strong>
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<div>The University of Massachusetts' Horae Gene Therapy Center will develop, test and deliver a gene therapy for Paxton through a clinical trial. <strong>This therapy involves using specially designed viruses to replace the faulty gene with a functional one. </strong>
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<div><strong>Funding Breakdown and Timeline</strong>
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<div><strong>We need to raise these funds urgently to give Paxton the chance he deserves.</strong> Your support will directly fund the development of this crucial gene therapy. <strong>Time is against us, but with your help, we can make this happen.</strong>
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<div><strong>How You Can Make a Difference</strong>
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<div>From the depths of our hearts, thank you to everyone who reads Paxton's story and donates. Please share our campaign to reach as many people as possible. <strong>Every dollar counts towards saving our son's life.</strong>
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<div><strong>Follow Paxton's Journey</strong>
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<div>Follow our journey and get updates through our website and YouTube channel. More social media links will be available soon.
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<div>Website: <a href="https://www.cureclcn6.org" target="_blank" rel="noreferrer noopener"><a href="https://www.cureclcn6.org" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.cureclcn6.org</a></a>
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<div>YouTube Channel: <a href="https://www.youtube.com/" target="_blank" rel="noreferrer noopener"><a href="http://www.youtube.com/" target="_blank" class="" rel="nofollow noopener noreferrer">http://www.youtube.com/</a></a>@CureCLCN6
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<div>On Facebook, Instagram and TikTok follow Paxton's Pioneers
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<div><strong>Heartfelt Thanks and How to Share</strong>
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<div>F<strong>rom the bottom of our hearts, thank you to everyone who has read this story and has donated to help our son. Please share our story with others to help us reach a wider audience and to reach our goal.</strong> 100% of all donations will go towards developing, testing and administering the gene therapy.
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<div>Cure CLCN6, Inc., is a registered non-profit organization in the state of California. Cure CLCN6 Inc., has applied for 501(c)3 tax exempt status with the Internal Revenue Service (IRS) and the application is pending. Upon approval, all donations will be tax deductible dating back to February 2024.
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Help Save Paxton's Life: A Rare Genetic Battle

Sean Zahul

<div>Sean's Fight against Medulloblastoma;


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<div>He has entered his 3rd year of fighting this Cancer. 

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<div>Taking a medication designed to prevent the cancer from developing in other parts of the body. And stopping any new growths. 

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<div>We do not know how long he will be taking this medication. The only determining factor is if the cancer does not develop. 

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<div>There are many more trips to hospital and clinics and physical therapy. Please support his fight. 

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<div>Reoccurring Medulloblastoma does not have a good prognosis especially in adults.


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<div>Please help and support his fight against this beast.


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<div>Approximately one year ago Sean was diagnosed with Medulloblastoma. I am going to try to describe his fight with this beast.


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<div>After diagnosis Sean was scheduled for surgery at the University of Miami. Dr Roberto Komotar was the surgeon that removed the tumor and after 6 days in ICU Sean was able to come home. That was a very difficult time for him, besides having the Craniotomy Sean had a cranial pressure tube inserted in his head to make sure that his brain and cerebellum was healing properly and no bleeders. This was the most difficult for Sean I believe. Because of the operation and coming down from anesthetic, this made Sean very disoriented and angry. He had episodes of outbursts and seizures for the first three days after surgery. (this is common for surgery of this kind). But every time this happened spinal fluid would start coming out the pressure tube which caused Sean great pain, and trying to calm him down to equalize pressure was sometimes difficult. At one point Sean had to be secured down to bed so as not to hurt himself. Sean made it through and was released to come home on the 8th day if I remember correctly. ( I was and still am by his side almost 24/7).


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<div>Once Sean was able to come we had to wait 10 days before his treatment schedule started. The plan of attack was 6 weeks of Proton therapy in combination of 5 individual doses of Vincristine Chemotherapy. The Proton therapy was all done at the University of Miami through the SCCC (Sylvester Comprehensive Cancer Center). This required travel from Boca Raton to Miami every single day of the week for 6 weeks, having weekends off.


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<div>The Proton therapy machine is a massive piece of equipment. The room Sean had to go into and be locked in was the best I can describe, walking into a 30x30 room surrounded by 8 foot thick concrete walls lined with lead and a door that appeared to be one that would be used for a nuclear attack. It was 4 foot thick lead and concrete on a roller system that sealed Sean by himself strapped down to a bed 1 inch thick and hard made out of a material that would let the protons through to achieve their target. Once locked in The treatment could be difficult, having to lay still for anywhere between 20 to 60 minutes while a large cylinder went around your head. Very similar to an MRI except 5 times as big at least. The technicians could direct beams of protons at infected areas in Seans cerebellum and spine that still showed areas of concern.


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<div>After 6 weeks of Proton Therapy Sean was ready to enter the second phase of treatment. Chemotherapy.


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<div>Sean’s Therapy Schedule was a 6 month journey of 3 different types of Chemo and continuous monitoring of body chemistry, physical therapy and hearing and optical monitoring.


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<div>The Chemotherapy schedule was the first week of each month we would drive to Miami., check into the hospital get Sean settled and start the IV. He had to have continuous IV fluids the entire time at the hospital. 8 hours before the first dose of Chemo (Cisplatin) followed by Vincristine then fluids each night was when chemo was administered. The second night was Cyclophosphamide and third was Cytoxan.


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<div>Sean did well the first cycle at first. We were released and went back home and all seemed ok. On the 8th day Sean had to receive another dose of Vincristine administered in Plantation Florida at the outpatient center located there. All was good at first and then all hell broke loose. Night after night of almost like clockwork every two to three hours


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<div>Sean was sick This went on for 2 weeks. The third week Sean was able to start keeping small amounts down but nothing heavy. As he ended the third week and entered the fourth week Sean started to need transfusions of blood and platelets. By the time his body started to recover he started the process again. The nausea got worse each cycle.


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<div>Besides the Chemo Sean was scheduled for three Spinal taps and 4 MRI’s during the chemo Cycle and after the cycles there was the final MRI before monitoring. All MRI’s and Spinal taps were looking great until. The last one.


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<div>The day everything changed April 1st this seems fitting God has played a joke on Sean. Sean had his final MRI or we thought before the monitoring phase. As we walked into the Doctor's office (Dr Gampell) I noticed three additional people in the room. My heart sank. I'm not sure if Sean noticed but I did. Dr Gampell told us both it was not good news. The MRI showed two small spots on his cerebellum that were suspect. Dr Gampell scheduled us to immediately talk to Dr Komotar that day and discuss options. Dr Komotar’s team informed us that the spots are too small for surgery and we needed to have another MRI in 4 weeks to determine growth or not. This was the longest 4 weeks.


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<div>April 23rd Sean had another MRI and then we waited. On Thursday of that week Dr Gampell’s office called and told us to be back on Monday to go over the results. I knew then something was not good. But keeping a happy face and not to bring Sean down I played it off. Monday came and we drove to Miami for the news. Myself and Sean walked into the office took vitals and sat and waited for Dr Gampell to enter. He came in greeted us and started to load MRI pictures on screen. Then the news. Recurring Medulloblastoma was the diagnosis. Options not many. We could try to enter a Clinical trail at 5 different hospitals spread across America basically all in phase one (basically a guinea pig) or stay at university and enter into a vigorous treatment of Metronomic and targeted Anti-Angiogenesis treatment. In short 5 different medications to include a Port designed to deliver another type of Chemo directly into Sean’s Cerebellum and starve the Cancer of oxygen and blast it with different Oral forms of Chemo to keep it from spreading.


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<div>Either way there is no 100% Survival rate from what i could determine is, Sean does nothing he could be gone within one year. I said Hell no. With the treatment There is not long term but 3-5 year survival is possible, with hopes of new treatments coming out each month each day things change.


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<div>This is ultimately Sean’s decision. As of today we/he is going to start treatment at the University of Miami and we will review every 6 months and reconsider options. Quality of life is our priority. I can not tell you how this tears me up inside even writing this. I am crying, knowing the Love of your life has been given this ultimatum at the age of 31.


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<div>Each day is a gift now every minute with him is a prized possession.


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<div>I am asking you to Help Sean, and help me help Sean With this battle Making our life a little easier by easing the financial burden that this beast has put upon him. I am his 24/7 caretaker which I would not trade for the world. The precious time we have together is a gift from God. Please help


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<div>#helpingsean, or #seanzahul


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Join Sean’s Team against Brain Cancer, No one fights Alone

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Sean Zahul

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Join Sean’s Team against Brain Cancer, No one fights Alone

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Support Mark's Cancer Treatment Journey

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Sean Zahul

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Join Sean’s Team against Brain Cancer, No one fights Alone

$30,080 raised

Support Mark's Cancer Treatment Journey

Help Save Paxton's Life: A Rare Genetic Battle

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