Nathan was born on March 25, 2004 and was perfectly healthy and met all his milestones. He loved to play basketball and soccer and we enjoyed watching him enjoy life.
In Kindergarten during a routine eye screening, they noticed he was having trouble seeing the chalkboard. We took him to three different eye doctors and were prescribed three different prescriptions. Something still felt “off” as he would stand inches from the TV or a piece of paper. As time kept passing by, we were fortunate enough to get on with the Chief Ophthalmologist at Children’s Hospital in Colorado.
After his exam, he told us that Nathan had Optic Atrophy and would continue to lose his vision. At that time, he was at 20/400 and considered legally blind. The Doctor knowing that a 7-year-old should not be going blind took his case to a roundtable with other doctors and we started the long process of DNA testing.
After many years and no answers our lives were shattered on June 10, 2015, when we walked into the geneticist’s office and were told that Nathan had Juvenile Batten Disease (CLN3). We were told to go home and make as many memories as we could as there was no treatment or cure. We set out to do just that. We make it a point to do big vacations every year to capture as many memories as possible. We know that time is not on our side, and we need to raise awareness for this disease. We are raising our son to die and that is not okay.
Today, Nathan is primarily in a wheelchair, has a feeding tube as a supplement until he can no longer eat by mouth, seizures and is completely blind. That describes him physically. He is a boy who loves Justin Bieber and Star Wars. He is a real ladies’ man and everyone who meets him is forever changed.
We are partnering with Beyond Batten in the hopes of spreading awareness and raising funds to continue medical research to one day beat this horrible disease. Our children deserve a cure, and we will do everything in our power to help find one.
Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Bind Up Batten is partnering with BBDF to find a cure for juvenile Batten disease for Charleston and hundreds of other children.
The Be Project is a $6 million campaign to fund the first-ever treatment for juvenile Batten disease. Your contributions are making a difference!