I learned about this site when I read that the Rivera’s were told their daughter Amelia couldn’t have a kidney transplant. I was interested because my 32 year old daughter who has WHS also has kidney failure and may need a transplant. I care deeply about the rights of all individuals with developmental disabilities. As I followed the Rivera’s situation I came to this site and have been obsessed with it ever since.
I want to tell Rochelle’s story because she deserves to have the story of her life told and I believe others can learn from her experiences. The problem is that I am older and I have never learned how to blog. My sister gave me an iPad, but all I use it for is to play solitaire when I can’t sleep at night. Since I found this site I have been reading your stories and now I am motivated to learn how to do what you all do so well.
I don’t know how or where to start. I thought of going back and telling you about her birth, diagnosis, and life with WHS, but instead of going back, I have decided to start with Rochelle’s 32nd birthday and go forward.
Rochelle celebrated her 32nd birthday on January 30, 2012. This in itself is an unbelievable miracle. WHS has resulted in severe developmental disabilities, physical disabilities, and complex medical problems for her. Her physicians predicted she would not not survive one, two, six, ten, twenty years. Now they say her life span will be short. All this means is that I am forced to live as though each day could be her last. That is not a bad thing. I cherish our time together and I am grateful for everyday she is with me. I focus on the present, not the future. I want her to live as long as I do. That’s my wish but I know this decision is not mine to make. We enjoy our life together, our family, church, neighborhood, and community. Life is good.
Birthday celebrations included 32 rounds of Happy Birthday (Rochelle’s all time favorite song), a long luxurious bath in her juguzzi tub (complete with bath balm), a mall walk(she prefers outdoor walks but that isn’t a good option for a medically fragile individual, in January, in Edmonton, Alberta, Canada), a new Convaid Metro stroller for mall walks, lunch out, and cake with family and friends in the evening. It was a perfect way to begin a new year and the rest of a wonderful life, which we hope will be long and healthy.
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I am so glad to meet you and Rochelle. Most of us have babies and young(er) children, so it is always inspiring to meet adults and see how they have grown. Welcome to our ‘family!’ All my best to Rochelle in the coming years~ may she be in good health and continue to break stereotypes and boundaries!
Loved reading about Rochelle and your happy life with her. Especially loved hearing about the birthday celebrations! If you ever want more help using the iPad I can give you my phone number, you could just tell me what you’d like to do and I could walk you through it. You did a great job posting this story at least, with pictures too! Loved it! -LeeAnn (Brodie’s mom)
I meant to leave you my email address if you want my number for help with the ipad … laflanary2@yahoo.com
Yes, I have read about some of the children on the site. Most of them are young. Reading about them is incredibly interesting. The knowledge about WHS and the healthcare that is available now is amazing, and much better than it was when Rochelle was young. I want to share Rochele’s story. She has done well, but the outlook for the children I am reading about is even better. Early diagnosis and treatment is making a big difference.
Wow! Thank you so much for sharing Rochelle’s story! She is such a strong and beautiful woman! You both are an inspiration to all of us here on the site!
I’m so happy you are writing your daughter’s story. You did a great job! And it sounds like your daughter is doing well, with good health and supportive family and friends. I’m looking forward to hearing more from you.
I think it’s wonderful that you’ve posted part of her story. I can’t wait to read more about her. She’s very lucky to have you.
It is very exciting to her about an older child with WHS. She is a beautiful women. I have a daughter that is 21 years old and is the angel in my life. She is currently having a lot of electrolyte problems. I am having a hard time trying to figure out what is going on with her. I believe it is her kidneys but they tell me that they don’t think so. They say she does have only half function of her kidneys but you can live with it. I am trying to figure it out because I know they will probably not give her a transplant because of her disease. So I am trying to keep them kidneys functioning as long as possible! Did you have any electrolyte issues with Rochelle? I really appreciate any information yo may have.
wendy.remer@yahoo.com
Thanks and may God bless you with many more yours with your Angel!!
Rochelle has electrolyte imbalances. Her magnesium is low, her potassium is high, and her CO2 is out of range. These imbalances are related to her kidney failure. Is your daughters creatinine high? Rochelle’s is very high and she also has high blood pressure. She will need dialysis in the near future. I will email you.