Comments on: The Family

By: Keegan Johnson

Keegan Johnson — Mon, 10 May 2010 19:27:32 +0000

Great job Starkweathers! What a big step for the whole Prader-Willi Syndrome community. We watched up in Canada (www.fpwr.ca)

By: Jennifer

Jennifer — Mon, 10 May 2010 06:43:58 +0000

My 4yr old brother is also a Prader Willi child and at this time is taking growth hormones 6days a week. We understand how hard it is to maintain your living situation when you have to keep everything under lock and key. Dakota is actually the youngest of us 8 and the 4 older than him suffer with autism. Our family has had to overcome many obstacles and it is a comfort to know that there are people out there that understand; and I am so glad that this family was blessed to have their home assisted to, because they deserve it. Let us not give up a hope for a cure:)

By: justin hope

justin hope — Mon, 10 May 2010 05:39:58 +0000

I am blessed to have helped for 26hrs straight ur blessed Starkweather family

By: Louise

Louise — Mon, 10 May 2010 04:14:32 +0000

We have a 31 year old daughter with PWS. She now lives in a group home and her weight is totally under control. She went from a life threatening 234 lbs. down to 115 lbs. which she has maintained for quite a few years now. We thank God every day for the wonderful people at PWH of Oconomowoc for all they do. I am looking forward to seeing the show tonight. Sounds exciting, I'm sure the family will love it.

By: dshabram

dshabram — Thu, 06 May 2010 02:14:48 +0000

Congrats Starkweater Family!!! Our son was diagnosed with Prader Willi Syndrome at 8 weeks of life and he gets growth hormone injections every day, we were kind of told the same things that he would be obese and all the bad stuff, but he is doing quite well because of the growth hormones our continued dedication to his health. We are so excited to watch this episode on Sunday. We too are just starting to build our home and are hoping to get some great ideas. Even though we don't know who you are or your family we are so happy that you have received this wonderful gift. You all look very happy!!! May God bless you all!!!

By: Danielle

Danielle — Thu, 06 May 2010 02:08:34 +0000

I work with adults that have Prader-Willi syndrome and live in group homes. I've been working with them for over three years and they amaze me every single day at the things they can accomplish. They should never be underestimated. I am so glad the Starkweathers have gotten this opportunity

By: nancyandbobbyh

nancyandbobbyh — Sun, 02 May 2010 19:13:42 +0000

Our praises goes out to the all volunteers who devoted their time, money and most of all their hearts to this family. Our son Gregg (13) also has Prader-Willi Syndrome and we know what they are experiencing on a daily basis. It's heartbreaking to know that these children (and adults) are hungry and obsessed with food each and every day and how much it affects their lives physically and even more importantly emotionally. Our son's weight is under control, but the social impact affects the life of our family tremendously. We are looking forward to watching how Extreme Makeover restructured their home to give Ethan and his family a less stressful and more loving environment. Bless all of you for doing God's work for them,

By: Renea

Renea — Mon, 29 Mar 2010 08:34:35 +0000

My family is also a PWS (Prader Willi Syndrome) family. My granddaughter was diagnosed at 11 months of age. One of us gives her a shot 6 days a week of Growth Hormones. This has made such an unbelievable difference in her development. She still has low muscle tone but has been able to walk, talk and even swim and ride her horse (with assistance). She is in a typical Kindergarten class with resource integration for math and reading daily. The poor muscle tone has shown more in her speech than any other part of her life. She does receive extensive speech therapy along with regular PT and OT services. With the outstanding help of the National Prader Willi Syndrome we were able to connect with other families with PWS children. PWS affects 1 in 15,000 to 20,000 children. There is no cure at this time. Please help us find a cure for this terrible disorder than makes our children hungry all the time.

By: mechelle

mechelle — Mon, 15 Mar 2010 14:40:30 +0000

hello my name is mechelle from surrey england and our daughter isabel of 3 years also has prada willi syndrome, we wish you and your family all the best with you
house renovation project. warm regards.

By: Jenny

Jenny — Mon, 15 Feb 2010 22:19:22 +0000

Great to see another Prader-Willi family getting a break! Our daughter with Prader-Willi is 17 and anyone who has “been there” knows how challenging it can be. I pray the show paints an accurate portrait of life with PWS. Congratulations Starkweather Family!