I have a bit of a dilemma and I'm not sure what to do about it. I was hoping to get some opinions. Let me start at the beginning and I'm sorry if I start to ramble. My 11 year old daughter was diagnosed with Nephrotic Syndrome in December of 2008. For the last couple of months I have been thinking of some kind of fund raiser I could have so that I could donate money to Nephcure. I have been thinking about this for a while now. I'm not very creative so I've been having a hard time coming up with something. Then something happened to just fall in my lap. Have any of you ever heard of Zoomba? It is sort of like Jazzercise but different kind of music, it's basically exercising to music with a group of people. I have personally never done Zoomba. My daughter was recently on the news becasue she nominated her teacher for the Golden Apple Teacher award. My friend goes to Zoomba and my daughters name was brought up. The Zoomba insructor held a Zoomba benefit one other time for a cancer patient and made $10K. When she heard about my daughter and what she has she remembered seeing her on T.V. This woman whom I've never met before wants to have a Zoomba fest in my daughters name and Kenzie would get half of the proceeds which I would then turn around and donate the money to Nephcure. I guess it's a big deal. Also she said we could raise awareness to people on what Nephrotic Syndrome is. Who knows maybe I live next to someone whose child has this and I don't even know it. Now my dilemma is when I mentioned this to my daughter she freaked out and started crying that she doesn't want anybody to know what she has or to even know that she is sick. She refused to let any of her friens know that she is sick. I feel so strongly about this but I don't want to do anything that is going to upset her either. I honestly don't know what to do. I think it is important for her to tell her friends about all of this but she refuses to do it. Somebody please tell me what you would do.
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I need some advice
- By Shermil
- Posted May 6, 2009 at 6:39 pm · 13 replies
- In Children with nephrotic syndrome
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- By irma3169
- Posted May 6, 2009 at 8:01 pm
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You can continue with the fundraiser idea to raise the awareness of Nephrotic Syndrome without using your daughter's name. It's for a good cause and you don't have to disclose personal information.
Contact the site and I'm sure they can give you information to use for the fundraiser. I think it's a wonderful idea and people will benefit from the exposure. My son was diagnoised with NS in late Feb and since have a secondary diag. of FSGS. I'm still learning more about this disease.
Be encouraged!
- By lamom
- Posted May 24, 2009 at 10:37 pm
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I completely understand your situation! My son, who is now in complete remission, does not want ANYONE to know that he has FSGS either. When he was diagnosed, we lived in a small town (everyone knew of our plight) , and then after 10 weeks of chemo moved to a larger city in the southern part of the state. He chose not to tell anyone of his trials and requested the same of me and his father. We honored his request =. I think he lives by the creed of "think it and it will be" He never wanted to be sick, never believed he was sick and still lives as though it never happened. He played FIVE sports this past year and made straight a's.....I think he would tell you that it is important to just be like everyone else. No pity, no attention.
I also want to do something to raise awareness, as well as money; however, I truly want to put my child and his needs above my own desires. In time, he may change his mind.....but until then, I am tight lipped.
good luck!
LA MOM
- By hope4health
- Posted May 25, 2009 at 10:58 am
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I would say to honor your daughter's wishes, a request that will not hurt her or put her health in jeopardy. When you get gobsmacked with a scary illness like this, out of the blue, you realize your health, what you do day-to-day, and even your future might not be in your control. This is one of the few things she has control over--whether she tells people or not. Also, she is at an age where peers start to become more important and I'd bet that she just wants to fit in and might be afraid of people's negative responses. As someone mentioned, there are other ways to raise awareness and money. Good luck.
- By mwl_NCF
- Posted June 12, 2009 at 4:35 pm
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Shermil,
I recall that we spoke on the phone a while ago. There are many ways to spread the word without using your daughter's story. Feel free to call me so we can discuss 1.866.NephCure ext. 10.
Have a great weekend.
Miriam
mlong@nephcure.org
- By maloudevilla
- Posted July 2, 2009 at 2:32 pm
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did u know that only my mom and dad along with my husband knows her illness...to save my daughter confidence and i dont want other people to pity or talk about her when they see her,,the positive result is that now even her face is much bigger she is starting to gain the confidence...
- By Kheid
- Posted July 9, 2009 at 9:49 am
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We live in New Orleans, and our house had four feet of water in it for a month after Hurricane Katrina. My three sons were in a school in Baton Rouge, and Garrett (the one with NS) was the only one who was truly happy there! He did not tell anyone he had a kidney disease (everyone at his school in N.O. knew since he has had it since he was 2), and when students would comment on how small he was (he was in the -10%) he would say "you should see my parents, they are TINY!) He asked me to only pick him up in the carpool line, so nobody would see I am 5ft 4in! He had created a whole new "person" and loved that he was not known as the 'kidney kid" or the one who had a feeding tube, or pectus surgery- amazing to us, that he was the one who adjusted so quickly! I can totally relate to your daughter's feelings, if they don't talk about it, it sort of doesn't exist :)
- By Shermil
- Posted July 9, 2009 at 2:58 pm
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Thanks kheid. She actually came to me and told me to do the fundraiser so that maybe we could help other kids out. She is such a tough little girl. Your son sounds like such a sweet heart. I though the kids are tougher than us parents most of the time. My daughter recently relapsed once again and the doctor wants to discuss other options with us. That doesn't sound so good. I'm a little scared to hear what they have to say. God bless all of you and I will keep all of these children in my prayers. Thanks again.
- By serolod
- Posted July 30, 2009 at 9:52 am
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Your story really hit home--not the fundraiser part but the daughter who just wants to blend. My 15 year old daughter was diagnosed with FSGS when she was 12 years old. All she wants to do is blend in with her peer group. She didn't want anyone knowing that she was "sick". It was obvious whenshe missed so much school and because of the meds and edema really bloated out. When she started high school she was invited to a sleepover and I had to tell the mom that she had this disease and she was on alot of meds --I didn't want anyone thinking she was into drugs and she needed to take all her pills. Of course she didn't want anyone to know. I sympathize because its a hard age to have this disease because one just wants to fit in and not stand out.
I do think having the fundraiser to raise awareness is a good idea and you dont have to use her name because you have all the ground work done-logistically that's the hard part. First, I would ask your daughter how she feels about you helping to raise awareness to find a cure and that her name will not be used but her disease will be profiled.
Good luck and try to keep those communication lines open because it is hard dealing with this disease in a teenager. They are up and down emotionally any way and then add steroids and there are mood swings but if you can just stay positive and be there you will get through it.
- By Shermil
- Posted July 30, 2009 at 12:17 pm
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Hi Serolod. We actually just had the fund raiser this past Sunday and we had a lot of people come to it. I was surprised at the outcome. My daughter did a great job. She just mostly hung out with her friends. My daughter just had a biopsy last Friday because she has become steroid dependant and they now want to put her on the drug Cytoxin. So far they are telling me that it is still minimal Change but those are not the final results. I won't get that until next week. She is the same way about spending the night at friends house. She begs me to not make her test her urine on nights that she is spending the night and sometimes i let it slide but when her levels are really high and I really need to keep track of it I try to take the mom aside and talk to her about it. It really is a tough age for them to be going through this. She has had boys ask other people behind her back why she looks so big and the boys that used to pay attention to her and talk to her no longer wants to talk to her. It breaks my heart but LOL my husband does not mind that so much. He does not want the boys around her. So I feel for your daughter. I know listening to other people on here there kids will just stand up and tell there class that they are sick but my Mckenzie refuses to let even her best of friends know.
- By manganese
- Posted August 8, 2009 at 10:23 pm
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I've been there. was diagnosed with FSGS when I was 13 and I didn't feel comfortable discussing it with anyone for many, many years. I didn't even tell my college boyfriend I was sick until many years after we broke up. There is a ton of baggage that goes along with having a chronic illness or a disability in our society, on top of the obvious worries. It can be difficult to navigate even as an adult -- and much more so as a kid.
It is really hard to live with a disease that doesn't necessarily fit the pattern people want/expect to hear -- you're sick, you get treated, you get well again. It can sometimes feel like you are constantly disappointing everyone if this doesn't happen for you. For me, it was (still is) very difficult to discuss with my parents because it was such a traumatic and worrisome experience for them as well. I hated to see them worried about me -- in some ways I think it's easier to be a patient than a family member.
Anyway, I have a lot of empathy for your daughter. One of the best decisions I ever made was to start meeting with a therapist who has experience counseling people with chronic illness. This was just 2 years ago, but it has been SO helpful for me to find new ways of looking at life with my disease and the uncertainty that comes with it. I really wish I'd been able to do that when I was diagnosed, because the psychological effects of dealing with something like this at that age are very deep. If it is at all possible for your daughter to find someone to talk with about these issues, whether it's a counselor or a youth group leader or another mentor...it is really something to consider.
Best wishes. I'm glad you were able to do the fundraiser.
- By jilld
- Posted August 9, 2009 at 11:35 am
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you need to consider your daughter's feelings FIRST!!! be sensitive to her concerns....girls...at any young age...dont ever want to feel different,,,for any reason...especially one that has to do with health!!!! find another,perahaps anonymous way to fund raise...your daighter is going through enough...don't make her deal with being 'embarassed' about her illlness as well,,,she needs you to support her...not exploit her!!!!
- By Shermil
- Posted August 10, 2009 at 11:22 am
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Actually jilld we ended up having he Fundraiser and it was a huge success and we had it because my daughter decided this is what she wanted to do. Had my daughter have come to me and said no forget it then I would have canceled the whole thing. I do support my daughter. It is I she comes to for protection and support over anybody else and I do a great job being there for her. She is my baby and I would never do anything to hurt her or "embarress" her.
- By Shermil
- Posted August 10, 2009 at 11:24 am
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Thank you so much manganese. I think findind somebody she can really confide in is a great idea. She talks to me about it but very little. And I agree with you, I think she can see us worried even though we try very hard not to show it so she feels she can't really open up to us about it. I really appreciate you replying to me and giving me that suggestion.
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