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• im new
• Posted: 2008-03-13 12:07:47 By jana p
• my son is 5 found out he has rp last year, still feeling the loss of hope for the future for him, i just need to talk to people who are dealing with this and am at lost for what to do, when i look at him i still cry, will this get any eaiser? janap

• Re: im new
• Posted: 2008-03-13 12:21:33 By Lis A
• Hi Janna. I am Lis and I am from Panama City, central america. I think I am just like you. My 5 year old son was diagnosed with RP last year on August and this is very very tough for my husband and I. I think it is always much more hard for the mother but we have to keep going for us, and especially for him. I am going to give you an advice, "Feel yourself thankful for what your son has and not for what he doesn't have." I always hear horrible cases from people about their sons that I always pray and say thanks to God for our beautiful family.
  Tell me more about yourself and your family. Are you married? Do you have other kids? I am married and I have another 2 year old son that is suppossed to be clear from RP. Does your son got the ERG? What doctor have you seen? Let's get in touch since I think we are in the same train.

• Re: Re: im new
• Posted: 2008-03-15 10:55:15 By jana p
• liz thank you for yor reply, yes i am married with 1 other so who is 15, we are going back to dr. in may, we found out in nov. i have a list of things to ask the dr. the will be taking pict. of my eyes and no our other son does not have it. i will get alot of information from the dr, so then i will go from there. Thank you again adn talk to you soon

• Re: im new
• Posted: 2008-03-13 12:59:14 By Darran Z
• Jana,
  
  I was diagnosed when I was 6 years old. I'm now 33.
  
  In my opinion, the best thing you can do is educate yourself about what RP is and is not. When people tell you your son will go blind, that term often refers to "legally blind" not total blindness.
  
  Learn the tools that will empower you and your son to overcome this. That may mean learning Braille, mobility with a cane or guide dog. There are much out there to make life easy than it was say, 20 years ago.
  
  Just because someone has RP doesn't mean it's the end of the world. Life goes on. What is "normal" for an RPer may not be defined as "normal" according to your terms. He likely already knows he can't see well (nightblindness for example). The most **** thing I t hink parents do is hide this from their children. Being open and honest as he grows will be the best thing.
  
  There are many services and resources out there. Right now, you would likely be more interested in ensuring he obtains the best education possible and that anything he needs will be provided by the school. Learn about IDEA (Individuals with Disabilities Education Act). Parents can make a difference if they know and understand what power they have by understanding such laws.
  
  Darran

• Re: Re: im new
• Posted: 2008-03-15 10:56:44 By jana p
• darren thank you also for talkingt with me i know you will be a big help in the following time to come. janap

• Re: im new
• Posted: 2008-03-13 20:04:28 By Helaine K
• Hi Jana,
  
  I just found out a few weeks ago that my 7 year old son has RP - it came as quite a shock to us because we have no family history of the disease. I cried for a week straight which I did not think was humanly possible! I am starting to feel a little better because, for one, I found a mom who has a son with RP around the same age as my son and we will talk on the phone about our boys. She has known for some time so she is in a different place in her head, a more positive one than I am.
  
  Second, I found out that the Foundation for Fighting Blindness can be a helpful resource, if you call them they might be able to help you find people in your area that you can talk to. They also have very interesting seminars and it helped me a lot to meet with the people that are involved because some of them have RP and it is nice to see and talk to very positive people with this disease. I cried a lot to them but they were so understanding and supportive.
  
  As a mom, it is hard to hear that our childs life will be different - not over - just different. Read the messages and answers on this website it is helpful too. Darran, I am learning, is very informative and helpful and thank goodness for all of the people, like him, who take the time to answer our questions. Pick everyones brains - knowledge is power!!
  
  I am hoping our sad RP moments will be few and far between as time goes on. Let us know how you are doing.
  
  Helaine

• Re: Re: im new
• Posted: 2008-03-15 10:59:12 By jana p
• thank you for your story, everyone will be such a big help to let all my feeling aout, i have lots of questions for the dr. when you go back in may, i will know more about our case then. janap

• Re: Re: Re: im new
• Posted: 2008-03-16 15:57:47 By Kim V
• Jana,
  
  I am 36 years old, with rp 3 little boys and a husband and had a sucessful career in agriculture. I think that I am only limited in my abilities by myself. RP is only an obsticle if you make it one. There are so many people to help and so many things in place to help. Don't think that your sons life will be different...it will be exactly as it is supposed to be, and if he can dream it he can do it. I think that we went through a very similar time as you as a family, but once you get through the "crap" you can see clearly and know that with hard work and dreams you can do what ever you choose to do. I am at a crossroads in my life, where I will start a new phase and divert from what I was doing because it required driving, now I will find a career that doesn't and I will work hard and be sucessful at it if I choose to be.
  
  It is so important for you to focus on what you can do and not what you can't do, to allow for exploration (not if it means bodily harm of course) but freedom to learn and grow like every other child, the only limitations we have are those we impose on ourselves!!! A leagally blind plant biologist taught me this, he was amazing, he used touch and smell to do plant work, he was an absolute inspiration to me and I will never forget him. So when you look at your son see the possibilities and what a great person he will be if you encourage and support his decisions, even if he does "fall down" a time or two. God never gives you more that you can handle....Take care and good luck to you..Kim

• Re: Re: Re: im new
• Posted: 2008-03-16 15:59:51 By Kim V
• Jana,
  
  I am 36 years old, with rp 3 little boys and a husband and had a sucessful career in agriculture. I think that I am only limited in my abilities by myself. RP is only an obsticle if you make it one. There are so many people to help and so many things in place to help. Don't think that your sons life will be different...it will be exactly as it is supposed to be, and if he can dream it he can do it. I think that we went through a very similar time as you as a family, but once you get through the "crap" you can see clearly and know that with hard work and dreams you can do what ever you choose to do. I am at a crossroads in my life, where I will start a new phase and divert from what I was doing because it required driving, now I will find a career that doesn't and I will work hard and be sucessful at it if I choose to be.
  
  It is so important for you to focus on what you can do and not what you can't do, to allow for exploration (not if it means bodily harm of course) but freedom to learn and grow like every other child, the only limitations we have are those we impose on ourselves!!! A leagally blind plant biologist taught me this, he was amazing, he used touch and smell to do plant work, he was an absolute inspiration to me and I will never forget him. So when you look at your son see the possibilities and what a great person he will be if you encourage and support his decisions, even if he does "fall down" a time or two. God never gives you more that you can handle....Take care and good luck to you..Kim

• Re: new
• Posted: 2008-03-18 14:05:25 By jana p
• kim, thnak you for your relpy, it is so nice to hear what people are saying, it makes me feel better.I took a step on monday and called AEA Keystone) and talked to them about my son, and they are going to help us with anything we need in order to make his life better in and out of school, i was so scared making the call, i need to get things done for him. It is all starting so fast once you make a call. thanks again janap