<div>In September 2023, Andy Kaplan was diagnosed with two different, both highly rare neurodegenerative genetic conditions, Batten Disease and Sanfilippo Syndrome. His doctors believe he is the only person to ever be documented with both conditions simultaneously. Both of these diagnoses are terminal.
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<div>As both conditions are neurodegenerative, they have already caused him to lose significant skills and mobility in a short amount of time. Despite the challenges, his family is working to manage his symptoms and provide him with the highest quality of life by surrounding Andy with love, compassion, and the best possible medical care available.
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<div>Andy turns six years old in November. Over the past three years, as he has continued to grow, his condition has progressed. Andy is now deaf, blind, non verbal, and non ambulatory. He is confined to a wheelchair and fed through a g-tube. His muscles are weakening, making him unable to independently support his head and body and has trouble with simple things like coughing. This makes daily life an intensive routine of medications, therapies, and treatments, all aimed at keeping him as comfortable as possible.
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<div><strong>Our goal is to raise funds to help the Kaplan family keep up with his mounting medical expenses as well as be able to have the funds to modify their home so that it is accessible as Andy’s needs continue to grow and change.</strong>
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<div>With your generous donations, over the last two years, the funds that have been raised have gone to: Kaplan family was able to purchase a wheelchair van in order to safely transport Andy to and from school, appointments, and even summer road trips! Remaining funds from the initial round of fundraising were also used to:
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<div>* Replace the Kaplans’ sunken front porch with a new, larger, and safer porch with custom wheelchair ramps to allow for easy transport in and out of their house
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<div>* Pay the remainder of the balance, for both Andy’s first and second wheelchair, that insurance did not cover
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<div>* Pay for additional weekly therapies, such as water and horse therapy
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<div>* Cover needed medical supplies not covered by insurance, such as underpads to protect wheelchairs and furniture from body fluids, positioning pillows to help him sit and lay in comfortable positions, and scales to accurately measure formula and medications.
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<div>* Create an emergency go-bag containing all supplies needed for an unexpected ambulance ride, emergency room visit, or overnight hospital admission.
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<div>* Purchase a racing/running wheelchair for Andy to use when competing in running events with his brother, Jordan.
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<div>* Purchase components to create a safe, adjustable bed that keeps Andy in safe positions while sleeping.
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<div>* Purchase a camera system to document and track Andy's seizures.
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<div>* Obtain a Hoyer lift to help safely lift and move Andy around the house.
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<div>* Obtain a new wheelchair that better fits Andy's growing body and changing physical needs.
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<div>* Obtain a stander device to allow Andy to be able be in a vertical, standing position, which improves digestion and circulation.
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<div>* Obtain new devices for Andy, such as a hospital grade pulse oximeter to monitor Andy's daily vitals and a high frequency chest wall oscillation vest to clear his lungs of mucus.
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<div>The needs don’t stop there, though. As Andy continues to grow older, his needs also continue to grow. This round of fundraising will help with such costs as:
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<div>* $150: Three weeks of diapers and wipes
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<div>* $60: 10 tubie pads (pads that keep Andy’s skin safe around his g-tube)
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<div>* $50 month: extra feeding and medical supplies not provided by insurance
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<div>* $40: aqua or horse therapy copay (2 sessions a week)
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<div>* $75: yearly horse therapy registration fee
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<div>* $350: 1 week of summer care and therapy at In2Great! (After insurance)
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<div>* $100: 1 month respiratory machine rental fees
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<div>* $50: monthly medications and supplies not provided through insurance
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<div>* $25: one hour of respite care
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<div>* $50: accessible shoes
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<div>* $20: parking at Lurie downtown for one appointment
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<div>* $500: wheelchair maintainince and repairs
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<div>* $1000: shower chair
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<div>Thank you for considering a donation to this worthy cause. Your support will make a significant difference in the lives of the Kaplans, especially Andy.
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<div>Love,
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<div>Colleen &amp; Adam Kaplan
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<div>Mary &amp; Dan Mostyn
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<div>Ed Kaplan
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<div>For large donations, checks are encouraged to prevent processing fees. Please let us know if you want your name listed here or if you wish to remain anonymous.
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<div>Want to learn more about Andy and how to support him and his family? Please check out <strong><a href="https://www.allforandy.com" target="_blank" rel="noreferrer noopener">www.allforandy.com.</a></strong>
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<div><strong>What is Batten Disease?</strong>
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<div>Batten Disease is a genetic disorder. It typically develops symptoms in late toddlerhood/early childhood. It presents as kids begin losing skills they previously had. It basically attacks the spine and legs as well as causes blindness. Children typically lose mobility and skills leaving them bedridden until death.
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<div><strong>What is Sanfilippo Syndrome?</strong>
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<div>Sanfilippo Syndrome is a genetic metabolism disorder. It leads to serious problems for the brain and nervous system- essentially kids' version of Alzheimer’s. It will likely cause Andy quite a bit of pain somewhere down the line as the disorder manifests.
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