East Utica Golf Tournament Presents Check to Local Family
A lot of hope and smiles near the first tee at the Valley View Golf Course in Utica on Monday.
Organizers of the East Utica Classic charity golf tournament presented a check to the Hallam Family of Utica, whose daughter Harlow has battled seizures since the age of three months and has been diagnosed with a rare genetic mutation - one of just five in the world known to have a such a condition, according to event organizers.
The $12,000 presentation came from proceeds of the East Utica Classic, which hosted its twelfth annual charity tournament earlier this month, and each year helps local families with burgeoning medical costs.
The tournament page explains the various obstacles facing Harlow, nearly since birth, and with the help of the Hallam family described the rare condition known as RNF13:
There are only four other children reported in the world that have this same mutation. It is very difficult to compare Harlow’s progress to the other children. The sequence of this mutated gene is not the same as the others, leaving her a bit of a mystery. So far this gene mutation is both low tone and high tone. Harlow experiences neurodevelopmental disorders like epilepsy and microcephaly, along with other abnormalities (such as thinning of her corpus collosum and mild hypoplasia). These issues have collaboratively resulted in her being nonverbal and non-ambulatory.
Organizers say they started the event many years ago as a way to get together and have a good time while helping a local family in need.
This year, the East Utica Classic is planning at least one additional check presentation to support another local family in need, Tournament President and Co-Founder Joe Cracchiolo said.