Brain surgery coming up, help if you can.

Hi, and thank you for taking the time to read my GoFundMe. Many of you know that my wife and I are the primary caregivers for my sister Scarlett, who has multiple physical and developmental disabilities. I’m now here for not only Scarlett, but primarily for myself. I was hit with Early Onset Parkinson’s disease in my late 20’s.  My disease progression is now stage 3. I’m a big believer in playing the hand you’re dealt, but my hand has finally come to a crossroads, and I will need help with multiple expenses related to Scarlett’s care as well as numerous medical appointments after the surgery.  I have been maximally treated with Parkinson’s medications for a number of years. I have been treated with Mirapex, Sinemet, Comtan, Amantadine and I honestly don’t remember what else. I am at a point where the medications are causing more side-effects than relief from this disease. The medications are no longer slowing the tremors, and I am having Dyskinesia and Dystonia which are quite painful. My reflexes have slowed and my ability to walk is compromised due to balance problems.  

Because of these issues, my Neurologist sent me to Upstate Medical Center to be evaluated for implantation of a Deep Brain Stimulator, also known as DBS, which will tremendously improve my level of functioning. This process can take up to 6 months, but I was fully approved in 6 weeks. I have been scheduled for DBS surgery on June 6th, 2019, and this surgery should alleviate the tremors, the Dyskenesias and help me walk better. I expect to be far better after this surgery. Here is my problem: Scarlett is unable to be left alone literally for one minute. I have 2 ladies who come in M-F. One works 7:30-3:30 and the other works from 5:00 until 9:00.  I have no regular weekend coverage, and if either of these ladies does not make it to work, there is no one to cover them unless I pay someone out of pocket, which I cannot afford to without help. Scarlett at times requires 2 people to transfer her, and due to her Cerebral Palsy and other issues, we never know when it will happen. I will be laid up for a bit after this surgery, and having people to care for my sister is not only in her best interest, but in mine as well so I have time to heal. I will not be able to carry more than 5 lbs for the first month, and 20 lbs for several months thereafter. I will be unable to pull my sister to her feet or help her to walk as I will be unable to support her weight. I am the person who gets her off the floor if her legs give out, and I will be unable to do that for some time.  While the surgery should be (I hope) fully covered by insurance, I will be making numerous trips to Syracuse to have the stimulator programmed, visits to the Neurologist, Neurosurgeon, etc. There will be many expenses with this surgery, and I hope you see fit to help me with them.



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Sean Kelly 
Sherburne, NY
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