As some of you know, we welcomed our second child into our family almost 4 months ago. Even before Shayna was born I have worried about how having a sister with PWS would impact her life. I like to think it will build character in her and we hope that we will raise her to be secure in herself and in her love for her sister.
I know many people bring their families to Florida to see Dr. Miller. When we called about a year and half ago to be a part of her research study we were told that it was a sibling study. At that time Ellie didn't have a sibling so we couldn't participate. Now that Shayna is here we are thinking of calling again - mainly because we really want to meet Dr. Miller and for her to meet Ellie.
Have you participated in this study? How invasive is it on the children? What is she researching? Do you believe it is important for PWS families to participate in research studies?
We haven't participated in this yet. I don't know much about it, but the main reason is that we've tried to save money not flying the whole family down! But I would really like to do it. Would love to hear from others who are involved in it...
ReplyDeleteI struggle with this. I believe so stongly in research but it is so hard to subject my child, and now children, to poking and prodding. Ellie participated in the NIH study when we were at the FPWR conference but we were never able to get them the blood work portion. She is such a difficult draw.
ReplyDeleteI will let you know. I am taking 3 of my 4 kids down in early April for the study. I will have the perspective of a 3 1/2 yr old, 9 yr. old and 17 yr old!
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