Help Maxton Beat Stargardt Disease

Maxton Cieslinski is a 9 year old boy from St. George, Utah.  He enjoys reading, playing with his little brother, fishing, building Legos, and all things Star Wars.  However, his true love is basketball.  Maxton's life was forever changed Friday, January 26th, 2018, when he was diagnosed with Stargardt Disease.  A straight-A student, reading at a sixth grade level while only in the third grade, Maxton began experiencing marked difficulties with his vision.  Upon noticing a sudden, sharp decline in his vision (he began struggling to read even a few words on a page), and receiving similar reports from his school teacher, Maxton's parents took him to the optometrist for what they thought would result in a prescription for glasses.  The optometrist could not find anything evidently wrong.  After subsequent visits to the optometrist, ophthalmologist, and then to the pediatrician, who likewise could not find anything wrong with the otherwise healthy boy, Maxton was finally referred to a retinal specialist who confirmed his diagnosis.  

Maxton was legally blind, left visually impaired from the effects of Stargardt Disease, an inherited juvenile form of macular dystrophy, marked by its progressive, degenerative damage of the macula (center of the retina responsible for vision), leading to central vision loss and eventual blindness.  He had likely been losing his vision from a very young age.  Worse yet, there was nothing the doctors could do to save or restore his vision, as there is currently no known treatment or cure.  Doctors recommended that Maxton get a guide dog or use a support cane, they talked about schools for the blind and the use of braille, and they suggested that his parents look into assistive technology to facilitate reading and performing other daily tasks again.  Needless to say, Maxton and his parents were left entirely overwhelmed and devastated, and they still are.  But the story doesn't end here...

On Saturday, January 27th, 2018, less than 24 hours after being told that he was legally blind, Maxton, along with his team comprised of other third graders, played their final basketball game of the city recreation league season.  Still reeling from the devastating diagnosis of the previous day and what it would mean for Maxton and his future, his parents, 5 year old brother, and members of his extended family watched in absolute awe as Maxton poured in 25 points and led his team to a resounding victory.  He exhibited that day, and in each ensuing day since the diagnosis, a tenacity and determination well beyond his years.  Maxton has shown that no matter what challenges we face in life, we must "never stop."  We must keep trying and never give up, as miracles are possible even in less than ideal circumstances.  Maxton and his family have a long road ahead in dealing with Stargardt Disease.  They need all the help they can get.  Even with medical insurance, the bills are piling up fast, and they have already exhausted their substantial savings over the last few weeks.  There will be continual appointments with specialists and genetic testing to evaluate the cause of the disease and its implications for Maxton and his family.  He has an immediate need for assistive technology to help him read again and perform other basic tasks, as assistive technology for the visually impaired can be very costly.

If you have been inspired by Maxton's devastating, yet remarkable story of perseverance and determination, please consider donating to his cause.  If you cannot afford to make a donation, please consider sharing his story.  On behalf of Maxton and his family, I thank you for your time, thoughts, prayers, donations, and support and I encourage us all to be like Maxton and "never stop."  Together we can help our star guard, Maxton, beat Stargardt Disease.  #neverstop #Maxtonstrong

Donations

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  • Irene Hayla 
    • $25 
    • 34 mos
  • Shane Klenk 
    • $30 
    • 34 mos
  • Julie Mickelsen 
    • $50 
    • 35 mos
  • Jackie Cieslinski 
    • $250 
    • 36 mos
  • Cristian Gonzalez  
    • $25 
    • 37 mos
See all

Organizer and beneficiary

Naly Stucki Stephenson 
Organizer
Saint George, UT
Brenton Cieslinski 
Beneficiary
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