#praderwillisyndromeawareness

[robert83]

Prader-Willi Syndrome: PWS is a lifelong, life-threatening condition. There is no known cause of PWS, nor is there a cure — yet Thanks to our friends at Children's Wishes for granting Rose her wish back in 2016! We got to stay at Give Kids The World and went to Disney, Universal Studios, and Clear Water Aquarium. We had so much fun. Rose remembers it all. We miss it. #pws #praderwillisyndrome #praderwilli #praderwillisyndromeawareness #pwsawareness #praderwilliawareness #givekidstheworld #yourwishourjourney #childrenwishes @gktwvillage @childrenswishes https://www.instagram.com/p/CAFcWpqHVY-/?igshid=4byaq88zvi4w

[robert83]

Prader-Willi Awareness They may have small sex organs, and their voices may not change in puberty. People who have PWS usually aren't able to have children. Here is Rose holding Raelyn! #pws#pwsawareness #praderwillisyndrome #praderwilli #praderwillisyndromeawareness https://www.instagram.com/p/CACqp3Nnc4K/?igshid=18hpxnwsxhdw7

[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]

Prader-Willi Awareness: The time immediately following a diagnosis of PWS can be very difficult, and parents typically are dealing with an overwhelming amount of new information. It's important to take the time you need to process what is happening and connect with others for support. That said, early interventions should begin as soon as a diagnosis of PWS has been made. Research indicates early diagnosis and therapies may reduce the duration of tube feeding and prevent early obesity in Infants with PWS. Early intervention in children under age 3 years, particularly physical therapy, may improve muscle strength and encourage achievement of developmental milestones. Physical, occupational, and speech therapies are recommended for infants with PWS. Rose had all 3 through Seven Hills and they all became our family! #pws #praderwillisyndrome #praderwilli #pwsawareness #praderwillisyndromeawareness #praderwilliawareness #earlyintervention https://www.instagram.com/p/B_4WSsuHhda/?igshid=10ku1viqkfi6w

[robert83]

Prader- Willi Awareness: For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry participants required a feeding tube in infancy. The most common type of feeding tube used in infants with PWS is a nasogastric tube (NG-tube), which goes through the nose to carry food into the stomach. The second most common type of feeding tube used is a gastrostomy tube (G-tube), which is a portal in the abdomen that delivers food directly into the stomach (also referred to a PEG tube). More rarely, other types of feeding tubes be used, including naso-jejunal (NJ) tube, which goes from the nasal cavity through the stomach and into the small intestine. Rose had a G-tube from 3 weeks old until med September of the same year. She actually stopped using it on our wedding anniversary. #gtube #pws #pwsawareness #praderwilli #praderwillisyndromeawareness #praderwillisyndrome https://www.instagram.com/p/B_zQ7AxHouR/?igshid=tzx64x3ta0r

[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

[robert83]

Prader Willi Awareness Children with PWS are hypotonic (floppy) at birth. Their poor muscle tone causes delays in sitting and walking and contributes to orthopedic problems such as scoliosis. Reduced endurance lowers the number of calories they can consume per day to manage their body weight, and impairs their quality of life. Rose does suffer from scoliosis and wears a back brace at night to try and straighten it. #praderwillisyndrome #pws #praderwilli #praderwillisyndromeawareness #scoliosis https://www.instagram.com/p/B_uWNwYn_I0/?igshid=ag6wufxkquji