Sullivan family raises awareness for Lowe’s Syndrome

On Friday, April 28, and Saturday, April 29, we hosted our third annual “Show for Lowe’s.” The Show for Lowe’s” is a big truck show we use to spread awareness and raise funds for our foundation. Our son Waylon was diagnosed with a rare genetic disorder known as Lowe Syndrome when he was six months old. We had never even heard of Lowe Syndrome until he was diagnosed. My husband Thomas Sullivan is an owner-operator and is leased on with Robertson Trucking. Thomas came up with the idea to use his truck to raise more awareness. He decided to put glasses all over his truck with the names of boys/men from all over the world who have Lowe Syndrome in them. He currently has over 250 names on his trucks.
Lowe Syndrome affects one in half a million males. It virtually always presents only in males. However, exceptionally rare cases have been documented in females. While not present at birth, many Lowe Syndrome individuals develop kidney problems at approximately one year of age. This is characterized by the abnormal loss of certain substances into the urine, including bicarbonate, sodium, potassium, amino acids, organic acids, albumin and other small proteins, calcium, phosphate, glucose and L-carnitine. Medications can be prescribed to replace the lost substances. The common features of Lowe Syndrome can consist of cataracts in both eyes, found at birth or shortly after, glaucoma (in about half the cases), poor muscle tone and delayed motor development, cognitive delays ranging from borderline to severe seizures (in about half the cases), severe behavior problems (in some cases), kidney involvement (“leaky” kidneys or renal tubular acidosis), short stature and tendency to develop rickets, bone fractures scoliosis and joint problems.
Our “Show for Lowe’s” has helped spread so much awareness and also raising funds for our foundation known as the Waylon Sullivan Foundation. We wanted to be a part of something bigger, so we started our foundation just a little over a year ago because we wanted to be able to help other Lowe Syndrome families who may be struggling with medical and funeral expenses. There are so many medical expenses for those with Lowe Syndrome. It can be very difficult to get life insurance on our boys due to their condition. Lowe Syndrome’s life expectancy is usually 40 years old, but we have had several pass away at very young ages. We pray by doing our part by spreading awareness through the “Show for Lowe’s” and our foundation, that we can make a difference.
We would like to thank the City of Hamilton and the Marion County Board of Education for helping us with our venue. If anyone would like to learn more about Lowe Syndrome, our show or our foundation, feel free to visit our website waylonsullivanfoundation.com. You can also visit lowesyndrome.org to research more about Lowe Syndrome.

Wendy and Thomas Sullivan
Hamilton, Ala.