Alexander H.

Condition: Pallister Killians Syndrome or PKS
City, State: Bend, OR
Club: Seven Peaks School Sparrow Club Service Hours:
Date Adopted: 12/19/2014

Alexander's Story:

Not long after Alexander was born in January of 2012, it became apparent to his parents, Elayne and Robert, that he had development issues. Alexander just wasn’t hitting the milestones that most infants do at a certain time, he was achieving those milestones at his own pace.

Alexander was originally diagnosed with Nystagmus. Nystagmus is a term to describe fast, uncontrollable movements of the eyes. Alexander was then added to the Oregon Deaf and Blind list. Elayne and Robert knew there was more, so with a more in depth blood test Alexander was then diagnosed with Pallister Killians Syndrome or PKS.

PKS is an extremely rare genetic syndrome, that is due to a random mutation of the isochromosome 12p. PKS is a mosaic condition, meaning it is very hard to find. Only 1 in 750,000 are diagnosed with PKS and Alexander is the only one in the state!

The condition causes low muscle tone, vision and hearing problems, also, severely delayed motor and developmental skills. Because of this, Alexander has Physical Therapy, along with, Occupational Therapy twice a week. He will also need bone anchored hearing aid. With low muscle tone, even eating can be an issue for Alexander.

Although Alexander’s life has been a difficult one, he is one of the most happy-go-lucky 3 year old you would ever meet. His eyes are getting stronger with each day and loves discovering more of the world!

Alexander will be adopted as a Sparrow to Seven Peaks School in Bend. Students will work hard to raise money for Alexander through sponsored community service and fundraising projects.


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