The Stargardt Sisters

 

 Sarah and A. J. Danny are teachers and the proud parents of six children: ten-year-old Lucia, eight-year-old Janna, five-year-old twins Sarafina and Artoro, three-year-old Nacey, and one-year-old Kerr. Each member of this close family has their own unique personality, but they always choose to do everything together. But recently, their family bond took on a new meaning.

When Lucia started complaining about not being able to see well in kindergarten, Sarah and A. J. took her to the eye doctor, where she was prescribed glasses, but she complained they weren't helping. Sarah and A. J. continued to take her to different eye doctors and tried numerous prescriptions, but nothing seemed to improve her vision. The doctors would tell them nothing was wrong with Lucia's eyes and even suggested that she just wanted attention. When Lucia entered the fourth grade, her vision was noticeably worse and started to affect her school routine; Sarah and A. J. knew there had to be a resolution for her. They made an appointment with a retina specialist, so Sarah took the day off work for Lucia's testing. Finally, at the age of nine, Lucia was diagnosed with Stargardt disease.

“The doctor started by telling me something very serious is wrong with Lucia's eyes,” recalls Sarah. “She started using words I had never heard before, then she wrote down ‘Stargardt disease’ on a card and handed it to me. I didn't understand the severity of it until I got home and started googling it and then realized what it all meant.”

Lucia started to ask her parents some tough questions, which made it even more challenging as parents to process her diagnosis.

“As it started to sink in, it felt like I got hit by a train, and I couldn't breathe,” says Sarah. “I had to explain to Lucia why I was crying because she didn't understand why I was so scared.”

Lucia made her parents promise to do everything they could to find a treatment for her Stargardt disease. Every night since her diagnosis, as they are tucking her into bed, Lucia has asked her parents, “What are you going to research tonight?”

So, every night after putting all their children to bed, just as Lucia asked, Sarah and A. J. would sit down and research online.

“You feel so hopeless as parents and do all you can,” says Sarah. “But then we connected with the Foundation Fighting Blindness and met other people who could relate to and are so inspiring. The amount of support, information, resources, and organizations that they very quickly got us connected with, we’re still blown away.”

“The Foundation has given us answers to things we didn't even know to ask,” says A. J. “And every time we have a question, the Foundation is able to find us that answer and get us help.”

Working with their medical and genetic teams, the Danny family were able to get the rest of their family genetically tested. After lining all their children up for their cheek swabs, a few weeks later, Sarah and A. J. received the genetic testing results, one by one, to find out if the rest of their children carried the mutation for Stargardt disease like Lucia. After learning each of the results in birth order, they found out that Sarafina has Stargardt disease, too.

“We still cried just like we did with Lucia's diagnosis, but we had a little more experience,” says A. J. “We quickly said we're not going to cry anymore; we had a different outlook this time.”

 Lucia and Sarafina already shared a bedroom, and now they participate in cheerleading together. Their bond that they already had has grown exponentially.

“When we found out Sarafina has Stargardt too, I felt sad, but I also thought that since I had gone through it, then maybe I can help her along the way, and we could bond more as sisters,” says Lucia. “I thought we could be called the Stargardt Sisters.”

“They are going to be able to support each other and love each other in a way that none of us will be able to understand,” says Sarah. “I am thankful that they don't have to be alone in this and that the two of them are fighting forward and are going to be able to live a fulfilling, happy life and play such important roles in each other's lives.”

Lucia has quickly learned to use magnifying devices and other assistive technology to help her with homework, continue drawing and creating art like origami, and use audiobooks to read her favorite series, Harry Potter. Lucia also uses a white cane, which her parents say she has a "love-hate relationship with," but now that she's decorated her cane and made it her own, she feels more comfortable and independent using it at school.

“When we first found out about Lucia's diagnosis, we were holding her hand a lot, literally,” recalls A. J. “But we learned through the Foundation community that it's okay to let her stumble and learn on her own. Now, Lucia is showing her expression and love for art; she's finding her dance routines, and she's finding her love for music. It's worth us taking a step back, which is allowing her to take a step forward.”

Lucia continues to dream big, as she always has. Lucia wants to be a teacher for the visually impaired or an interior designer when she gets older.

“You can still do great things in your life,” says Lucia. “And whoever's with you can help you along the way.”

“To be able to have other people there for you, like the Foundation Fighting Blindness, who have either gone through it or specialize in that field or just have their own passion for it, that community is what's going to lift you up and get you out of those holes that you might be in at times,” says Sarah. “They're there for you and will continue to be there for you no matter where your journey takes you.”

 

This Beacon Story is sponsored by Johnson & Johnson.