Goal:
 USD $5,000
Raised:
 USD $845
Campaign funds will be received by Deanna Dobberstein
Our youngest daughter Avaree Dobberstein (10) was diagnosed with Battens Disease CNL3 back in January of 2023 at 9 years old. Battens is a genetic degenerative terminal Disease with no cure. This was discovered 2yrs after her diagnosis of Diabetes Type 1 in January 2021 when her eye sight didn't improve at all. We took her to a few different eye doctors to figure out what was going on but no one could give us an answer. Eventually we were recommed to take her to Kellogg Eye Center in Ann Arbor, MI. For a year they checked her eyes and tried different test to find out what was causing her to lose her vision so fast. In the end they ruled Avaree as legally blind with degenitive eye disease, Retina Pigmintosa, Stargardt Disease, and cone and rod disease. However, they still didnt know what the cause of her vision loss was, so they eventually did a genetic test. This genetic test gave us Avaree's diagnosis of Batten Disease CNL3. From there we went to Columbus Ohio at the Batten Disease clinic to meet with the Batten Disease specialist. Where they preformed multiple test from cognitive, physical, and speech therapy. These test are meant to help us understand what stage her degeneration is at. From a parents stand point she is happy and determined to keep up with her siblings! She loves to imagine, making up stories, and playing with her Bratz dolls. Her biggest dreams include becoming a famous Youtuber, and to one day meet Pink so she can see her and ask her to play a song for her. She also wants to visit a couple of locations before she completely loses her vision like The childrens Museum in Las Vegas and Alaska to meet Santa at the North Pole. As parents we are doing everything in our power to be as supporting of her dreams and try to give her the best experiences a kid can ask for before her health and physical capabilities no longer allow her to do those things. Please keep Avaree and our family in your prayers and thoughts.
What is Battens Disease? Batten disease is a group of fatal genetic disorders. Providers also call this group of disorders neuronal ceroid lipofuscinosis (NCL). There are 13 known types of Batten disease. All types cause many of the same symptoms. These include seizures, vision loss and cognitive (thinking and reasoning) problems. Avaree has CNL3 specifically. This disease is an inherited disorder that primarily affects the nervous system. After 4 to 6 years of normal development, children with this condition develop vision impairment, intellectual disability, movement problems, speech difficulties, and seizures, which worsen over time.
Sending Love!
From the phi kappa sigma organization. Thank you Seth for this opportunity.
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