Wednesday, April 6, 2011

new article

I just came across this interesting article. It makes me happy more research is coming along for kids with BBS, but I know we have a LONG way to go. I'm trying to be patient.

9 comments:

  1. Hi Shawni,

    I read about your Young Mother of the Year award - congratulations - and then started reading your blogs.

    Would you or any of your friends/colleagues who write health-related blogs be willing to help out my stduent and me with a research study:

    Do you blog about your illness or do you know someone who does? Please help my student, Pam Ressler, RN, BSN, HN-BC, and me better understand patient blogging by participating in a short online survey: https://www.surveymonkey.com/s/TuftsPatientBloggingSurvey.

    Thanks so much,
    Lisa

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  2. Dear Shawni and family,
    I never read your story before, until this evening when I was searching the internet for new information about BBS. My family and I live in the Netherlands, and our daughter Daphne (3 years old) was diagnosed with BBS about a year ago. I recognize a lot of your fears, hopes and worries for the future. And I think it's amazing what you and your family have already done by raising so much money for the foundation fighting against blindness. We can only wish that this research also finds its way to our country... I wish I could send you a photo of our beautiful princess along with this comment, but that won't work I'm afraid. My husband and I were watching your photos of Lucy, and we were touched by the similarities we see when we look at her, and her beauty... what a pretty girl that is! We are also so very proud of our daughter, and also of our youngest son, Julian (1 year old) who is already starting to understand that his big sister is not like other children, but the love between those two is getting bigger every day. I hope I've not made too many mistakes in my English writing. It feels good to share this with you! Maybe we can contact eachother, if you also feel the need to share, or help eachother. I wish you all the best, and we will remember you in our prayers!

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    1. Thank you so much for your words and I love to be connected with others who are going through some of the same feeling, frustrations and joys. Please let me know if there is anything I can do for you and I will keep you and your family in my prayers. :) Much love, Shawni

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  3. Amazing story and she's such a sweetheart. I hope researchers find a cure soon. I'm spreading the word by putting her cause on my blog, along another little boy is that is battling cancer.

    My blessings to you and your family,
    Barbara
    Español para Niños (Spanish for Kids)

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  4. My mother just passed this along to me today as well. I always look forward to days like these where new results are found and our hope grows.

    My sister was diagnosed at the age of 26 only because of the RP. She did have many of the other symptoms throughout her life but BBS was never considered.

    Just wanted to say a quick thanks for all that you do for the cause. Enjoy the holidays with your family!

    Steve

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  5. Our daughter is only 4 months old and was diagnosed with two mutations of BBS when she was 3 months old. Her diagnosis came after extensive blood tests which were prompted by the fact that she had polydactylyl toes on both feet and very large cystic kidneys, your blog gives us hope....thank you do much for sharing your experiences and information on research with us!

    Krystal V.

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    1. Oh I so feel for you but so glad if I can help with anything. Let me know. Love, Shawni

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  6. Hi, I read your blog 71 toes and came across the link to this page. I just wanted to share with you that I think the research and fund raising you have done is an awesome thing! My mother who is now in her 60's was diagnosed with RP at a very young age and completely lost her vision by the time she was 12. She is also the current president of the Utah council of the blind in Salt Lake City, which has a more local focus on helping those who are visually and hearing impaired. I would honestly recommend that you maybe look into signing up Lucy for some of the programs. They have quite a bit of youth that are losing their sight and amazing programs to help them gain a sense of independence through the trials they are facing. They are extremely family oriented as well. Love and support can go a long way, my mother graduated with a masters in child psychology form the U of U and has accomplished many great things with absolutely no vision. Although I wouldn't wish blindness on anyone, I wouldn't change my mother for the world. Good luck in your research and I hope the best for your little angel.

    If you wish to contact the organization for direction or anything else, my mothers direct line is (801)292-1156

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    1. Oh thank you so much for sharing your inspiration. I appreciate that so much! I wish we were closer so we could utilize all those great things but I'm so glad to have a contact and to know about the organization. Thank you thank you.

      Much love, Shawni

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