tag:blogger.com,1999:blog-435799301890791935.post4733845091870273595..comments2023-09-13T02:16:59.799-07:00Comments on A Legacy of Love: Bardet-Biedl SyndromeNicole Lovehttp://www.blogger.com/profile/03078930846323798559noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-435799301890791935.post-22883091518830298382014-08-06T11:09:49.023-07:002014-08-06T11:09:49.023-07:00I would like to contact you I would like to contact you Anonymoushttps://www.blogger.com/profile/16040629516219740038noreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-79752040364655906942014-06-01T23:27:23.843-07:002014-06-01T23:27:23.843-07:00I am the mother of two adult children with BBS and...I am the mother of two adult children with BBS and they are both blessings in their own way. Danielle has been on dialysis since she was 16 years old (eleven years now) and graduated from college with assistance for her vision problems (4.0 grade point average).. She uses her limited vision very well and has trouble with OCD and Asperger's syndrome. Her brother, Norman is lower functioning but is extremely happy and very entertaining. He does not have her kidney issues but his autism limits his ability to utilize his remaining vision as effectively. He is able to read (hyperlexic since age two), add, subtract and work anything electronic better than I can. I remember how we felt and what a struggle it was when they were little and we were unsure of how they would adapt to their differences. There was a lot less known about BBS when our kids were born. Their unaffected brother will be a big help to them in the future. I believe that being as strong and loving as you are, your children will be just fine. PJhttps://www.blogger.com/profile/00201158483886738705noreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-77996944957095853712013-09-13T17:10:36.339-07:002013-09-13T17:10:36.339-07:00I love that I found this article because my son wa...I love that I found this article because my son was told to have ARPKD but now they believe it was BBS. My son sadly passed at birth because of his genetic disorder but it is nice to become informed on the syndrome because of any further pregnancies I may have. It has only been 5 months since my Jameson has passed but I know he is doing well. You're children are beautiful and you are one strong mommy....I admire your strength. Thank you!Brooke Durfeynoreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-64490662674810599922011-10-21T19:30:22.096-07:002011-10-21T19:30:22.096-07:00My daughter Isabella was diagnosed with BBS since ...My daughter Isabella was diagnosed with BBS since the age of 3 mos old. We have since had 3 other children who are all symptom free. I am now expecting my 5th child and am going for my 20 week ultrasound in the next week or so. I must say I am very nervous. Isabella and my husband and I have gone through quite alot throughout the past 12 years of our life and I know that it will be quite a long journey. I am doubtful that she will ever be independent. Although our reality has not been easy and will continue to be a challenge, I can not imagine our life without her. Isabella shows signs of Autism/Asperger's however, she is the most loving and innocent little girl(young lady) who would is so happy just to be loved. That is our primary calling.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-6261852320770435012011-09-29T07:44:06.616-07:002011-09-29T07:44:06.616-07:00I am 18 weeks pregnant and just found out as well ...I am 18 weeks pregnant and just found out as well that my baby boy has 12 toes and 12 fingers. I can totally relate to what you are going through. My daughter that is now 13 months has Bardet-Biedl Syndrome and so will my unborn son. I want to thank you for posting your story. I now know I am not alone. <br />Peace84945@aol.com-TanyaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-14335768434276580572011-07-01T12:16:07.921-07:002011-07-01T12:16:07.921-07:00You are not alone...I was 7 weeks pregnant with my...You are not alone...I was 7 weeks pregnant with my second child when they finally realized my first child had BBS. At the 12 week u/s I asked them to try and count the toes...ta-da!!! So I know EXACTLY what you are going through!!!<br /><br />Please feel free to contact me! <br /><br />Krista<br />kbulger@ymail.comkrista bulgernoreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-22432450138090822842010-12-05T18:21:01.090-08:002010-12-05T18:21:01.090-08:00I too have Bardet-Beiedl Syndrome though I didn...I too have Bardet-Beiedl Syndrome though I didn't find out I had it until after I turned 21 even though I showed having syptoms since after I was born and growing up. I can tell you this it's not easy for me every day living with this but the best thing I do is not to let it get me down an just keep on going living my life the best way I know how, and take one day at a time.Shae Millernoreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-45620609916371640892010-07-29T09:17:53.294-07:002010-07-29T09:17:53.294-07:00You are such an amazing mother! I want you to know...You are such an amazing mother! I want you to know that I've always looked up to you throughout YW. I don't know if I've made a bit of difference in your life, but you have in mine. You are an amazing example to me and others. I know I'm only 13, but I'm always here to give smiles and hugs when you need them. :)Tessa Hatchetthttps://www.blogger.com/profile/14742809424104879399noreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-49049472689121432442010-07-29T08:19:41.016-07:002010-07-29T08:19:41.016-07:00Nicole, motherhood is really the most blessed call...Nicole, motherhood is really the most blessed calling. I am so happy that you have such beautiful children and a wonderful husband. I've always admired your strength. Remember heavenly father is there for you as well.Kyle, Kira, and Danielhttps://www.blogger.com/profile/17258508728185396807noreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-91078026284557486882010-07-28T21:51:53.983-07:002010-07-28T21:51:53.983-07:00Nicole,
I'm so glad you posted about your blog...Nicole,<br />I'm so glad you posted about your blog on Facebook. I would love to sit down and talk with you. I know I'm not going through the exact same trials you are, but I know what you are feeling and how scary things are. I know Savannah and Xander are special spirits just like our Brayden. You and Courtney have been entrusted with their care. Heavenly Father loves you and will strengthen you through the hard times. PLEASE let us know what we can do for you. Earl loves teaching Primary with Courtney. And I feel so humbled by the service you performed for us with the Beehives. You are an amazing mom and member of our ward. I can't wait to get to know you better.Terihttps://www.blogger.com/profile/09810305557861924413noreply@blogger.comtag:blogger.com,1999:blog-435799301890791935.post-75620420431101334082010-07-28T21:37:21.886-07:002010-07-28T21:37:21.886-07:00I first have to say that I am impressed with your ...I first have to say that I am impressed with your ability to express your emotions in words. You are a great writer!<br /><br />You have told me a lot of what you have written in this post- you haven't said much about the emotions and heartache that you have experienced. What sweet little angels you have the privlage to be the mother of. You are amazing and you are so lucky to have a great husband at your side. <br /><br />I am so glad you love YW and it makes me happy that you have found a friend in me and some of the other leaders.lindseyfrancomhttps://www.blogger.com/profile/03203651665641566600noreply@blogger.com