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Malcolm & Danielle’s 6 Week Hospital Visit

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My nephew, Malcolm, has struggled all of his life with neurological issues. These varied malfunctions were caused by a virus he contracted in utero (CMV) that created scarring in the left side of his brain. The scars have resulted in uncontrollable seizures that, in the past year, have intensified. Malcolm has an allergy to the most common seizure controlling medications and all available meds have been maximized out on dosing with no change in seizure behaviors. The seizures are clearly painful and are beginning to infringe in the right side of his brain.

All of the current options available with modern medicine were unsuccessful. 

On July 30 of this year Malcolm will be going into the hospital for 6 weeks to undergo a full left side hemispherectomy, which is removing the entire left half of his brain. The hope for the surgery is to slow the constant seizing that’s happening.  His (fantastic, collaborative and caring) neuro team all agree this highly invasive and unpredictable  surgery is our only option remaining to give him a chance at a seizure-free life and giving his right brain the ability to flourish.  The surgery will not prolong his life, however, it will provide a less painful life.

Due to the current COVID-19 pandemic, once  Danielle and Malcolm go into the hospital for surgery, recovery and treatment neither of them will be able to leave or have visitors.  

Danielle, Boston (Malcolm’s 11 year old heroine sister), and Malcolm’s life will be on hold for 6 weeks of recovery and rehab. Danielle will not have income or anyway to handle her personal finances.   Danielle is a homeowner and has large annual payments coming up. She also would like to have funds to provide extra entertainment for Boston while living with her grandparents without her mother and brother. Boston has a beautiful voice and is taking lessons via Zoom and has interest in avirtual camp.

These funds will provide food for Danielle at the rehab center, homeownership, childcare for Boston, and typical needs for the 6 week hospital stay.

Whatever support you can spare is a gift to the family. If you can call, send pictures, FaceTime, donate, send positive vibes or pray, we’ll take it!
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    Organizador

    Lauren Berens
    Organizador
    Fairport, NY

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