All sponsorship proceeds benefit this year’s partner, Harlowe Grace Ilse. On April 2nd, 2021, Erica Grabczyk and Ryan Ilse’s amazing three-year-old daughter Harlowe was diagnosed with Late Infantile Batten Disease (CLN2).
Batten disease is an extremely rare and devastating genetic neurological disorder that effects every aspect of a child’s life. As Batten progresses, children suffer cognitive impairment, progressive loss of vision, hearing and motor skills, and eventually dementia. Life expectancy for children with Batten is 6 to 12 years.
Luckily, there is a treatment available for this type of Batten disease – a treatment that will continue throughout the entirety of Harlowe’s life. While this treatment is not a cure, your participation in sponsorships from this golf outing will be used to help give Erica and Ryan the hope of slowing the effects of Batten disease until a cure can be found.