Lowe Syndrome Conference Expense

Hi, my name is Julie Leopold, and I have two sons with a rare genetic disorder called Lowe Syndrome. Matthew is 8, and Joshua is 6. They were both born with cataracts, and have chronic kidney disease. They have very low muscle tone, and my oldest son is still unable to walk. They do not speak, are still in diapers, and still have to be hand-fed with pureed food. Matthew has had several hard-fought battles with kidney stones and inflammation, and also has hydrocephalus (water on the brain). Joshua has learned to walk in the last year, but still has trouble with holding objects, and has rejected a lens implant. Leaving him aphakic. (No lenses in his eyes) Rendering him essentially blind.


In June of this year, the Lowe Syndrome Association will hold an bi-annual medical conference that allows parents, caregivers, doctors, and therapists a chance to learn new treatments, research and ways to help our boys battle this life-threatening disease.

Please help my family and I get to this conference so we can learn all we can to help my children fight this disease.


Thank you all so much for your support, and helping us get to this very important medical conference.