#praderwilliawareness

[robert83]

Prader-Willi Awareness The chance for another child having PWS is less than 1%. However, this risk may be as high as 50% in families where an imprinting defect is the cause of a child's PWS. In honor of Mother’s Day, here is a picture of my Beautiful wife with our two beautiful girls! My wife is amazing. She is the backbone to our family. Without her I would have no idea where I would be. Our dream was to always have a family together. Back in 2011 Rebecca and I had suffered a miscarriage and that was extremely heart breaking. We did not give up. And in 2012, Rose came along. We did not expect to have a Special Needs child, but we did not care and still learn and go on her journey with her. A couple of years go by and yet again we suffered another miscarriage. We did not wether to stop there and call it quits or continue. We decided we were not giving up and that is when Raelyn cane along. Raelyn is extremely energetic from the time she wakes up till she goes asleep. Rebecca has both kids during the day and is Rose’s teacher for this distance learning. She is stressed at times, but she is amazing. Happy Mother’s Day sweetheart!! We love you! #pws #pwsawareness #praderwillisyndromeawareness #praderwilliawareness #mothersday #amazingmother https://www.instagram.com/p/CAAUnQRnfql/?igshid=vsxj0p8njuja

[robert83]

What is Prader-Willi syndrome? PWS is a complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior. It is typically characterized by low muscle tone, short stature (when not treated with growth hormone), incomplete sexual development, cognitive disabilities, behavioral problems, and the hallmark characteristics – chronic feelings of insatiable hunger and a slowed metabolism that can lead to excessive eating and life-threatening obesity. Those who have PWS need intervention and strict external controls, sometimes including padlocking access to food, to maintain normal weight and to help save their lives. We give Rose a nightly shot of Growth Hormones. It is our normal. #pws #praderwillisyndrome #praderwilli #praderwillisyndromeawareness #praderwilliawareness #pwsawareness https://www.instagram.com/p/B_66MPFnfhc/?igshid=1nlj4oqppl8na

[robert83]

Developmental Delays Children with PWS have their milestones delayed about 100 percent, meaning that if typical children are sitting at 6 months and walking by 12 months, children with PWS tend to first sit independently at 12 months, and walk by 24 months on average. To help speed that process, we work with the child’s physical therapist to get the child to do as many core strengthening exercises as possible. I also prescribe ankle-foot orthoses (AFOs) to help stabilize the ankles, making it easier for them to get up standing. Once they are walking well, we’ll shorten the braces, or discontinue them. #pws #praderwillisyndrome #praderwilli #pwsawareness #praderwilliawareness (at Woonsocket, Rhode Island) https://www.instagram.com/p/B_2n_8Nn0Xd/?igshid=1xbnyj40od9jf

[robert83]

PWS Awareness: The critical genes must come from the baby’s father in order to function properly; the mother’s genes in this area are “turned off” through a rare phenomenon called “genomic imprinting.” There are at least three different chromosome errors that can keep these key genes from working normally, and all result in the child having Prader-Willi syndrome. The two most common errors that cause PWS can occur in any conception—in other words, PWS is not usually an inherited condition; it just happens. In very rare cases, however, parents may have a 50-percent chance of having another child with PWS. #pws #praderwillisyndrome #praderwilli #praderwillisyndromeawareness #praderwilliawareness https://www.instagram.com/p/B_wra-kHr7t/?igshid=ma7z982s0h9c

[misosakeshibas]

#JTLF and I are wearing Orange today to support our friend Lincoln who has Prader-Willi syndrome. Show your support too! #praderwillisyndrome #praderwilliawareness #orangeforlincoln #goorangeforpws @boston25 @klemanowiczboston25