Brianna and Mackenzie – written by their mum, Amy

Hi, my name is Amy and I am writing on behalf of my daughters, Brianna (13) and Mackenzie (10) who have Stargardt’s Disease. I’ll start with Brianna’s story.

Brianna had been struggling with not being able to see for almost three years before she was finally diagnosed correctly with Stargardt’s. We went through a couple of optometrists, then we went to an Opthalmologist who didn’t see anything either. He had her take an MRI to rule out any tumors and finally told us that it was psychological, probably due to her being a high stressor and an over achiever. He even told us to put drops in her eyes (just natural tears) and tell her that it would make her see better within 6 weeks and that would make her better. We did this, I’m ashamed to say now, and obviously nothing happened. Someone told me to try vision therapy which is basically using eye exercises to try to teach the eyes to work together.

After 6 months of that, there was no improvement. At this point, she was up for her yearly eye exam and the optometrist at the vision therapy place dilated her eyes and finally noticed something. She immediately discontinued vision therapy and referred us to a pediatric ophthalmologist in Seattle. He confirmed her diagnosis and further referred us to the retinal specialist in his same practice. This was all just last June and Dr. Barloon has been great. He diagnosed it immediately, had her through the standard tests and it was definitely Stargardts. We had all records from all previous doctors, forwarded to him. Dr. Barloon told us that she had been testing at 20/200 for almost the whole time. We were devastated to say the least. Yes, we felt horrible about the prognosis, but mostly we felt horrible that she had been suffering for so long with no answers and for us thinking it was actually psychological.

Brianna is the oldest of our 4 children. And wow what a girl she is. She is very bright with a desire to do her best in all that she does. During all of this, she was a trooper and we are amazed at how she adapted and continued achieving at the level that she was without the support she deserved. She gets straight A’s, is in honors classes in middle school, rock climbs (which, if you think about it, is a wonderful peripheral sport – she never did like softball) and plays the piano beautifully. We had always wondered why she chose to memorize most of her pieces instead of sight-reading them for piano. Now we know why. She has an incredible ear and has adapted to do much of her learning by ear. She is a great listener. She’s been able to get by with mostly that so far. I realize that she is going to need to make further adjustments as her education progresses. She sits in front in all of her classes. Her teachers make copies of the overheads for her to copy into her notes and they are all aware of her situation and look out for her. We are so grateful to them and their willingness to help out.

In March 2004, our second daughter, Mackenzie, was diagnosed with Stargardts. She had begun complaining that it was hard seeing the board at school in December, so our red flags went up. We had her in to Dr. Barloon February and by March after the various tests, the diagnosis was confirmed. She was seeing at 20/50 at that point, but as Stargardts can do, it deteriorated quickly. We had her rechecked in August before school started and she was down to 20/200 in both eyes like Brianna. She took the news pretty hard. She is a different kid than Brianna with different strengths. Mackenzie has a great sense of humor, which is how she deals with a lot of things. But she is struggled a deal emotionally. It is different for her because she knew what was happening or what was going to happen to her whereas Brianna, it just happened with no answers for so long. And she just adapted. Pros and cons to both situations I guess. I have to be careful with not comparing the two and how they deal with it, It is tricky at times.

Our biggest push, with all this knowledge and with schooling, has been for them to learn to be their own advocate. They need to be able to tell others what they need in order to accomplish what they need to do. They are both learning to do this. Our school district has a vision teacher who is a liaison for all students in the district who has vision loss issues. She is wonderful and makes sure that Brianna and Mackenzie have what they need. They have overheads copied for them to have in front of them, they have large print books and use the magnifier that comes with windows when on the computer. They both have hand-held magnifiers. Mackenzie likes using hers more than Brianna. Brianna has kind of become set in her ways and likes to do it how she wants, since she had to with not knowing what was going on for so long. Mackenzie is moldable at this point and we are trying to introduce her to alternatives that will be useful. She is open to using a monocular and doing some keyboard training with the vision teacher. We don’t know about driving for the future. It works for some, I hear. Our state doesn’t seem to be one that allows for people to use the biopic lenses. We’ll cross that bridge when we get to it. We are meeting all of their concerns now for their 13 and 10 year old worlds.

Anyway, as a mom, I would love to talk to anyone who has advice for dealing with children with this, especially through adolescence. I worry and I pray. I am open to offering support also. It’s been wonderful reading all the stories and experiences with Stargardts. Brianna and Mackenzie have made a few internet buddies who have Stargardts and love this. I would love for them to continue to get to know others who are around their age who are living with Stargardts. We would love for this to be something they could help others with along with getting support for them.

Thank you,
Amy Leavens
A mom in Snohomish, WA

Feel free to contact us at: leavens@msn.com