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Two Weeks Ago

Posted by Tom C. on 8/6/2009 3:19:16 PM.

Hi, my name is Tom. I just found out about two weeks ago that my 15 year old daughter has stargardts, of course we were devastated. She seems to be dealing with it very well so far, although I don't think she understands the whole picture just yet. Her uncorrected vision is 20/100 now and she will be able to get her drivers permit with the use of a bioptic telescope. She is also starting high school this year. I was looking for some other parents on this site who might have been through some similar experence

There are currently 13 replies.

      

  • 1 . Re: Two Weeks Ago
    Posted by lelizabeth on 08/07/2009

    Tom:

    My Dad's name was Tom and you, like him obviously care about your family more than anything else.

    My son was diagnosed about 3 years ago. He is also 20/100. He will be 13 at the end of the month and will start the 8th grade soon after. He hates having a vision tacher, sitting in the front of the class, etc. Like doing homework 1st, reading, brushing his teeth & going to bed at a reasonable hour, I make him do these things anyway because it's good for him.

    The 1st thought I had (after "this can't be happening, this wasn't supposed to happen") when he was diagnosed was - "It's not cancer". That really is the crux of it all. Our kids are going to be okay. They will have difficulties with transportation certainly, but that's about the worst of it.

    Career wise, they won't be surgeons or jetfighter pilots but they can be pediatricians or aircraft engineers! I would have loved to be a gymnast or a singer but I am terminally clumsy, have 0 athletic talent & can't sing! How diffrent is it really?

    Marla Runyon, Olympic Silver Medalist (runner) has Stargardts. They say Steven King does too. One reporter in the Washington Press Copr was called out by GW Bush for wearing sunglesses during a press breifing. The president later apologized when Stargardts was explained to him. My Mom has the condition & she raised 2 daughters, was married 3 times (it didn't slow down her social life or popularity!!) and went on to get a BA in Secondary English Eduation, teach, work on numerous charities, is an avid reader, biker, walker & a super involved grandmother! There is no stopping these kids.

    My best advice is cry it out, then do what we parents all do. Shake it off & figure out what you need to do to make it better. Each child is different but you will find out what she needs as you go along. We can make this OUR problem to a great extent & just let them live their lives.

    You are not alone! There are othe parents like us making it right for their kids everyday in a thousand diffrent ways. You will too and she will soar because of it.

    Best wishes,

    Laurel

    (This post was edited by the author on 08/07/2009 )



  • 2 . Re: Two Weeks Ago
    Posted by Tom C. on 08/10/2009

    Laurel,

    Thanks for the reply and great advice and you're right it's not cancer. I realize I have no choice but to accept this, although I'm having a bit of a tough time swallowing it. Anna is adopted, she came into our home when she was 3 days old, so I have no idea if Stargardts runs in her biological family. I had never heard of stargardts until she was diagnoised. At this point I'm just trying to educate myself as much as possible about the disease and hopefully make some connections with other parents who might have some helpful insights. I'm certainly not glad there are other kids out there with this disease, but it sure is good to know you're not alone.

    Thanks, Tom

    (This post was edited by the author on 08/10/2009 )



  • 3 . Re: Two Weeks Ago
    Posted by Judith Lesner on 08/12/2009

    Hi Tom,
    Welcome the the message board. For many parents (myself included), the time after their child's diagnosis is the most difficult period. It does not necessarily get "easy" but it definitely gets easier. As you learn more about the condition and see how well your daughter is coping you will start to feel less anxious. Laurel's post is full of good advice. Those of us who have been there really do empathize with what you are going through. Feel free to ask questions or express your feelings on the board - we do understand.
    Judith



  • 4 . Re: Two Weeks Ago
    Posted by mweather on 08/14/2009

    Hi Tom,

    I just found this webiste.

    I too have a 15 year old daughter with Stargardt's. It came as a total shock since neither myself nor my husband knew we had the disease - much less ever heard of it.

    My daughter was diagnosed when she was 12 - end of 6th grade. To make matters worse, we moved her to a new state/school/etc (military family) - and top it off with a parent deployment. There as shock, depression, anger and marital problems. We kept telling ourselves it was not "life-threatening," just "life-altering." It was little comfort as we watched our youngest child struggle. She had to give up her love of volleyball and basketball, she had no friends, and her weight dropped to dangerous levels.

    I agree with a previous response - cry it out. We did.

    With lots of prayer - and time - fast forward 3 years. Our daughter is now happy, healthy, optimistic, outgoing teenager. She's broken school records in cross country, swimming and track, and has won numerous academic awards. We couldn't be prouder parents - not because of the awards, but her attitude towards life - but it didn't happen overnight.

    As for school, Indiana has been great. She has a duplicate set of books at home with big print. She has a machine that enlarges the print at home, and they have a room with special equipment at school where she takes her tests. She also has a hand held magnifier - mainly to see her "test messages!" Reading does wear her out.

    My daughter is 20/200 in both eyes, so right now it is tough watching all her friends go through drivers' ed and talk about getting a license. But, if that's her biggest hurdle in life, we feel blessed. We have come to feel extremely fortunate that it is not terminal, and it is not blinding - like most other juvenille eye diseases.

    My daughter has mentioned that it would be nice to talk to someone who has her same eye issues. Her friends are great, but don't really understand what she goes through. If your daughter would like to speak with my daughter, I would be happy to send you the contact information.

    I know it's a tough time, but there will be many blessings that come from it.

    Maggie

    (This post was edited by the author on 08/14/2009 )



  • 5 . Re: Two Weeks Ago
    Posted by Tom C. on 08/14/2009

    Thank You Maggie and everyone who has replied, it's a great help. Maggie I will talk to my daughter this weekend about connecting with your daughter. I'm not sure how she will feel about that. She's kinda shy and not very out going when it comes to making new friendships. Although I think it would be great. We haven't really had a serious talk about stargardts as of yet. I guess I'm still somewhat in denial myself and also I'm waiting till I feel the time is right. I just don't want to dampen her spirits, she's a very happy little girl, and excitied about starting high school. Her school started last Monday here in Tennessee. Also I'm not sure how people go about exchanging information on here. Anyway thanks everyone.

    Tommy



  • 6 . Re: Two Weeks Ago
    Posted by mweather on 08/14/2009

    Tom - I just wanted to let you know that though I currently live in Indiana, I am a "Tennessean." It was either last summer, or the one before that in which the Tennessean (Nashville newspaper) had a huge feature article on a brother and sister with Stardardt's. There are so many tools the state will provide for your daughter. Even though my daughter is often called "the blind girl" by her friends (and she's O.K. with it), she still doesn't like it pointed out that she can't see well. I'm sure the school will work with you to ensure the least amount of intrusion. I know it's tough. I think more so on the parents because we can't fix it - we feel helpless for the first time. I'll be sure to say a prayer for you and your family. Maggie



  • 7 . Re: Two Weeks Ago
    Posted by Judith Lesner on 08/14/2009

    Hi Maggie,
    Thanks for the post. I think you are right on when you talk about how parents feel "helpless". We want so much to protect and fix things for our children and to do the best for them - then we find something that is not fixable and we are thrown for a loop. I do think the helpless feeling starts to go away with time and seeing what things we can do to support our children.
    Judith



  • 8 . Re: Two Weeks Ago
    Posted by Tom C. on 08/17/2009

    Hi Maggie, I talked to my daughter this weekend and she said she would like to talk to another girl who has stargardts. If you're daughter is interested my email is tmcreasman@peoplepc.com
    Tommy



  • 9 . Re: Two Weeks Ago
    Posted by 3greatkids on 11/21/2009

    Hey, I just found this site and am reading all these posts and wanting to shout from the rooftop that there is a treatment that is hopeful and for us has proven to be a drastic change for our daughter Sara, 15, who was diagnosed six months ago with Stargardt's disease.

    Making a long story short, we found Dr. Gerard Nolan at Nolan Eye and Laser in Farmington, CT by doing an internet search for "successful treatments for Stargardt's disease." That was the one of the best days of my life - being able to communicate with his office, take my daughter at the end of Oct. 2009 and then see the improvement from 20/200 to 20/75 in a matter of 12 treatments. Please know there is hope! I urge you to contact this doctor and do what you can to help your daughter or son!

    With a happy heart I pray you have as much success as we have had,
    Judy



  • 10 . Re: Two Weeks Ago
    Posted by Mother of Twins on 07/22/2010

    I am the mother of identical twins, aged 37, both of whom have Stargardt's. One of my sons is a police officer. He will have to renew his driver's license soon, and he admitted to me today that he doubts he will pass the eye test. If he doesn't pass, obviously he will no longer be able to work; both of my sons have two young children. Since Stargardt's is not related to stress, the police department will not offer disability. We have been to a retina specialit, who gave us little hope for help. He did suggest, however, that the (identical) twins would be good candidates for a study and that we should look into such a possibility. I would like to contact Dr. Nolan as well as Dr. Traboulsi. If anyone can furnish me with phone numbers, I would most appreciate it.
    Laurie - mother of twins.



  • 11 . Re: Two Weeks Ago
    Posted by Mother of Twins on 07/22/2010

    I am the mother of identical twins, aged 37, both of whom have Stargardt's. One of my sons is a police officer. He will have to renew his driver's license soon, and he admitted to me today that he doubts he will pass the eye test. If he doesn't pass, obviously he will no longer be able to work; both of my sons have two young children. Since Stargardt's is not related to stress, the police department will not offer disability. We have been to a retina specialit, who gave us little hope for help. He did suggest, however, that the (identical) twins would be good candidates for a study and that we should look into such a possibility. I would like to contact Dr. Nolan as well as Dr. Traboulsi. If anyone can furnish me with phone numbers, I would most appreciate it.
    Laurie - mother of twins.



  • 12 . Re: Two Weeks Ago
    Posted by Mother of Twins on 07/22/2010

    I am the mother of identical twins, aged 37, both of whom have Stargardt's. One of my sons is a police officer. He will have to renew his driver's license soon, and he admitted to me today that he doubts he will pass the eye test. If he doesn't pass, obviously he will no longer be able to work; both of my sons have two young children. Since Stargardt's is not related to stress, the police department will not offer disability. We have been to a retina specialit, who gave us little hope for help. He did suggest, however, that the (identical) twins would be good candidates for a study and that we should look into such a possibility. I would like to contact Dr. Nolan as well as Dr. Traboulsi. If anyone can furnish me with phone numbers, I would most appreciate it.
    Laurie - mother of twins.



  • 13 . Re: Two Weeks Ago
    Posted by Mother of Twins on 07/22/2010

    I am the mother of identical twins, aged 37, both of whom have Stargardt's. One of my sons is a police officer. He will have to renew his driver's license soon, and he admitted to me today that he doubts he will pass the eye test. If he doesn't pass, obviously he will no longer be able to work; both of my sons have two young children. Since Stargardt's is not related to stress, the police department will not offer disability. We have been to a retina specialit, who gave us little hope for help. He did suggest, however, that the (identical) twins would be good candidates for a study and that we should look into such a possibility. I would like to contact Dr. Nolan as well as Dr. Traboulsi. If anyone can furnish me with phone numbers, I would most appreciate it.
    Laurie - mother of twins.


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