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Help Kevin Jr fight his brain tumor

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 Please read about Kevin Jr, he is the kindest 6 year old boy you will ever met. He has lost vision completely in one eye, partially in the other, had 6 brain surgeries, and even had to switch schools because his tumor caused him to need services his small school couldn't provide. Any help is greatly appreciated! Please share so he can get as many prayers as possible. His fight isn't over! Kevin Jr's world turned upside down after a year of struggling to find the correct prescription for glasses. He was first diagnosed with a prescription so high I questioned he could have been that visually impaired and no one noticed. When the glasses didnt work the doctor told me it would take time for his eyes to adjust. After several calls and months, with his eyesight declining, Kevin Jr was referred to a pediatric opthamologist.    The opthamologist noticed Kevin Jr's eyes twitched too much for the machine to accurately analyze them. He couldn't see well enough for a standard vision test and the opthamologist checked his eyes' reaction to different lenses. He was then prescribed an even higher prescription. The new prescription seemed to help him see clearly for a few months.     Suddenly, our family noticed a rapid decrease in Kevin Jr's vision. He ran into walls, couldn't find our house, and refused to play. He was given an urgent appointment where the opthamologist decided to send him for an MRI.    The MRI showed a massive tumor on his pituitary that had caused optic nerve atrophy. He will never see out of his left eye again. The right eye has a slow response and does better with high contrast, but is still blurry. The tumor, craniopharyngioma, has no cure or standard prognosis since it is so rare. So far, Kevin Jr has been hospitilized for over 40 days, had 6 brain surgeries, a seizure caused him to be airlifted, he was sent to the ICU on a ventilator, and has the starting of adrenal insufficiency. The tumor or the treatments will eventually cause his pituitary to fail and he will need more hormone replacements. Every step of the way we are forced to make decision that cause less damage, but keep my baby with me. The doctors removed as much as they could and will monitor it for the rest of his life. Update: On November 13th we found that the tumor had grown back larger than when it was first diagnosed. Once again, his doctor removed as much as she was able to get. We had hoped to avoid radiation, but now he will need to begin radiation as soon as they can get him in either Chicago or Cincinnati. Both locations are a few hundred miles from our home. He will have another surgery on the 30th to place a port in his chest to be used for sedation during radiation treatments.    We are asking for help with medical bills. We have a high annual out of pocket expense we have maxed out since diagnosis on August 7th, and a new year starting with a sedated MRI every 3 months, endocrine labs, and visits with each of the specialist on his team. There will also be several different therapies: occupational, physical, vision, speech, and possible others added for behavior and cognitive impairment from the surgeries and treatments. He has lost some of his previous abilities and becomes frustrates with his limitations. He was cleared to ride a bike with training wheels, but forgot how to pedal and broke down begging me to fix his bike to make it go. He is easily exhausted and hasn't regained his stamina. Some of the medications, including his steroid to prevent renal failure, are not covered by insurance.   They say "when it rains, it pours" and our family is learning this first hand. A portion of the request would go towards making our home more accessible for Kevin Jr. The stairs leading to the house are a danger and he normally walks up the steep hill, he struggles and is at risk of falling onto the concrete steps. My van broke down the first week he was hospitilized and is beyond my ability to repair. We would use a portion to ensure we have reliable transportation for all future treatments. Every little bit helps and hopefully we can get your support for our son. There are so many giving people out there, I know my son will not be one of the many that loses the battle with this rare brain tumor because they couldn't afford the treatment! Thank you so much for your time and prayers. It is difficult to share everything here. Please checkout Kevin's page for more pictures and details about his journey https://www.facebook.com/Kevinjrscranio/ 
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Donations 

  • Barbara Ragan
    • $5 
    • 5 yrs
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Organizer

Malissa Lane
Organizer
Mitchell, IN

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