Comments for About Sanfilippo syndromeAbout Sanfilippo syndrome http://www.curesf.org Work. Pray. Love. Sun, 19 Feb 2012 01:21:28 -0600 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Lucas and Juno–the story of Lucas Hembree and his special dog by Buffy Kirkland http://www.curesf.org/2011/07/lucas-and-juno-the-story-of-lucas-hembree-and-his-service-dog/#comment-3121 Buffy Kirkland Sun, 19 Feb 2012 01:21:28 +0000 http://www.help2saveourkids.com/?p=1658#comment-3121 I came across this story on pinterest and had to repin it!! i just wanted to say we have a very special place in common!! my son brayden is 4 years old and was diagnosed with autism at 2. he attended the Birth to Three in blount county. i know of lucas through christie bales. And i just wanted to say that to be in the birth to three family is great!! and that we will keep your family in our prayers. I came across this story on pinterest and had to repin it!! i just wanted to say we have a very special place in common!! my son brayden is 4 years old and was diagnosed with autism at 2. he attended the Birth to Three in blount county. i know of lucas through christie bales. And i just wanted to say that to be in the birth to three family is great!! and that we will keep your family in our prayers.

]]> Comment on Korean Pharma Company gets approval for Hunter syndrome drug by ESTHER CHAVES RAMIREZ http://www.curesf.org/2012/01/korean-pharma-company-gets-approval-for-hunter-syndrome-drug/#comment-3082 ESTHER CHAVES RAMIREZ Thu, 16 Feb 2012 04:52:52 +0000 http://www.curesf.org/?p=6808#comment-3082 MEGUSTARIA SAVER MAS ASERCA DEL MEDICAMENTO Q ESTAN PRODUCIENDO YA Q MI HIJO FERNANDO PADESE SINDROME DE HUNTER Y ESTA EN TRATAMIENTO CON ELAPRASE SOMOS DE MEXICO DITRITO FEDERAL Y SOY PRESIDENTA DE UNA ASOCIACION DE PACIENTES CON SINDROME DE HUNTER OJALA PEPUEDAN CONTESTAR PARA INFORMAR AMAS FAMILIAS AFECTADAS MEGUSTARIA SAVER MAS ASERCA DEL MEDICAMENTO Q ESTAN PRODUCIENDO YA Q MI HIJO FERNANDO PADESE SINDROME DE HUNTER Y ESTA EN TRATAMIENTO CON ELAPRASE SOMOS DE MEXICO DITRITO FEDERAL Y SOY PRESIDENTA DE UNA ASOCIACION DE PACIENTES CON SINDROME DE HUNTER OJALA PEPUEDAN CONTESTAR PARA INFORMAR AMAS FAMILIAS AFECTADAS

]]> Comment on Lucas and Juno hit the big time! by Elaine http://www.curesf.org/2012/01/lucas-and-juno-hit-the-big-time/#comment-2857 Elaine Sat, 04 Feb 2012 19:15:15 +0000 http://www.curesf.org/?p=6900#comment-2857 Louis, Many thanks for your message. I will definitely pass this on to Chester and Jennifer. I feel pretty sure they would love to meet you and Diamond, as well as your friend. Kind regards and best wishes to you and your friends. Elaine Louis,

Many thanks for your message. I will definitely pass this on to Chester and Jennifer. I feel pretty sure they would love to meet you and Diamond, as well as your friend.

Kind regards and best wishes to you and your friends.
Elaine

]]> Comment on Lucas and Juno hit the big time! by Elaine http://www.curesf.org/2012/01/lucas-and-juno-hit-the-big-time/#comment-2855 Elaine Sat, 04 Feb 2012 19:10:31 +0000 http://www.curesf.org/?p=6900#comment-2855 Louis, I will definitely pass this on to Lucas' parents. Many thanks and kind regards to you. I hope you'all get to meet. Louis,

I will definitely pass this on to Lucas’ parents. Many thanks and kind regards to you. I hope you’all get to meet.

]]> Comment on Lucas and Juno hit the big time! by Louis H. Anderson http://www.curesf.org/2012/01/lucas-and-juno-hit-the-big-time/#comment-2854 Louis H. Anderson Sat, 04 Feb 2012 19:05:02 +0000 http://www.curesf.org/?p=6900#comment-2854 I live in northeast TN (Gray) & although I don't have any health problems NEARLY as serious as those Lucas lives with daily, I do have more than a few issues that require the use of a motorized wheelchair following some rather serious injuries in Iraq in 2004. My service dog "Diamond" (as well as her rather short-lived predecessor "Sami") have given me the quality of life doctors said would NEVER again be mine. I would consider it an great honor to be able to meet & spend any amount of time w/ Lucas & Juno if his parrents would be willing & potentially introduce him to a VERY good lifelong friend who was born w/ OI & numerous other "life ending" conditions who is now a judge as well as his young daughter who has numerous inherited health issues as well. You have my email address & my cell # is ____________. PLEASE consider passing my loving prayers & request on to the Hembree family. Thanks, Louis I live in northeast TN (Gray) & although I don’t have any health problems NEARLY as serious as those Lucas lives with daily, I do have more than a few issues that require the use of a motorized wheelchair following some rather serious injuries in Iraq in 2004. My service dog “Diamond” (as well as her rather short-lived predecessor “Sami”) have given me the quality of life doctors said would NEVER again be mine.
I would consider it an great honor to be able to meet & spend any amount of time w/ Lucas & Juno if his parrents would be willing & potentially introduce him to a VERY good lifelong friend who was born w/ OI & numerous other “life ending” conditions who is now a judge as well as his young daughter who has numerous inherited health issues as well.
You have my email address & my cell # is ____________. PLEASE consider passing my loving prayers & request on to the Hembree family.

Thanks,
Louis

]]> Comment on Lucas and Juno–the story of Lucas Hembree and his special dog by Cheryl Klenzak http://www.curesf.org/2011/07/lucas-and-juno-the-story-of-lucas-hembree-and-his-service-dog/#comment-2740 Cheryl Klenzak Mon, 30 Jan 2012 23:33:50 +0000 http://www.help2saveourkids.com/?p=1658#comment-2740 I pray that you will continue to live, love and be as wonderful as you are today. I pray that you will continue to live, love and be as wonderful as you are today.

]]> Comment on Juno’s journey – From kill shelter to miracle for a special needs child by Lisa http://www.curesf.org/2011/07/junos-journey-from-kill-shelter-to-miracle-for-a-special-needs-child/#comment-2715 Lisa Sat, 28 Jan 2012 20:16:33 +0000 http://www.help2saveourkids.com/?p=1021#comment-2715 I thought the movie with Harrison Ford was about this and that a medicine was discovered by Fords' character - a crusty scientist and he is still working on it.... ????? I thought the movie with Harrison Ford was about this and that a medicine was discovered by Fords’ character – a crusty scientist and he is still working on it…. ?????

]]> Comment on Is a weighted blanket right for your child? by Eileen Jackson http://www.curesf.org/2012/01/weighted-blankets-right-for-your-child/#comment-2589 Eileen Jackson Tue, 24 Jan 2012 01:16:18 +0000 http://www.curesf.org/?p=6750#comment-2589 Hello Elaine, I can help with your question on how to determine the best weight for a child's weighted blanket. Most Occupational Therapists recommend using 10% body weight plus one pound to determine the starting point to weight the blanket. For example a 50LB child would take a 6LB in a blanket as the starting point. We then take the child's weight, the size of the blanket and the child's sensory needs to determine the final weight. So if the same 50LB child was 41" tall, they would take a 6LB blanket in a 43" x 52" toddler blanket, or an 8LB in a 43" x 75" twin blanket. If the child is a deep pressure seeker the weight would be adjusted again. SO as you mentioned it is important to take all factors and not just weight to determine the appropriate weight for the blanket. We also wanted to mention for DIY blanket makers to check poly pellets carefully, there are many different grades of pellets on the market today. Your readers will want one that is rated to a high temperature so they can be machine washed and dried safely, non-toxic, hypoallergenic and what is known as "virgin" in the pellet industry. This means that they have never been used before or recycled from other products. There are pellets that are recycled from things like car batteries or other toxic substances that your readers would not want to use. Sorry the post was so long but hope it was helpful. Eileen Jackson DreamCatcher Weighted Blankets Hello Elaine,
I can help with your question on how to determine the best weight for a child’s weighted blanket. Most Occupational Therapists recommend using 10% body weight plus one pound to determine the starting point to weight the blanket. For example a 50LB child would take a 6LB in a blanket as the starting point. We then take the child’s weight, the size of the blanket and the child’s sensory needs to determine the final weight. So if the same 50LB child was 41″ tall, they would take a 6LB blanket in a 43″ x 52″ toddler blanket, or an 8LB in a 43″ x 75″ twin blanket. If the child is a deep pressure seeker the weight would be adjusted again. SO as you mentioned it is important to take all factors and not just weight to determine the appropriate weight for the blanket. We also wanted to mention for DIY blanket makers to check poly pellets carefully, there are many different grades of pellets on the market today. Your readers will want one that is rated to a high temperature so they can be machine washed and dried safely, non-toxic, hypoallergenic and what is known as “virgin” in the pellet industry. This means that they have never been used before or recycled from other products. There are pellets that are recycled from things like car batteries or other toxic substances that your readers would not want to use. Sorry the post was so long but hope it was helpful. Eileen Jackson DreamCatcher Weighted Blankets

]]> Comment on Is a weighted blanket right for your child? by Elaine http://www.curesf.org/2012/01/weighted-blankets-right-for-your-child/#comment-2588 Elaine Tue, 24 Jan 2012 00:52:49 +0000 http://www.curesf.org/?p=6750#comment-2588 Donna, thank you SO MUCH for the information! Is your site Craft Nectar? I want to give you the proper credit for the information. I'd like to incorporate this into the article, if it's okay, because more readers will see it that way. Thanks for the update on polyfil. That's good information. Also, if you have time to give us more information on weight calculations, that could be useful (or give us a direct link to it, if available). Thanks again. Donna, thank you SO MUCH for the information! Is your site Craft Nectar? I want to give you the proper credit for the information. I’d like to incorporate this into the article, if it’s okay, because more readers will see it that way.

Thanks for the update on polyfil. That’s good information.

Also, if you have time to give us more information on weight calculations, that could be useful (or give us a direct link to it, if available). Thanks again.

]]> Comment on Is a weighted blanket right for your child? by Donna Chambers http://www.curesf.org/2012/01/weighted-blankets-right-for-your-child/#comment-2586 Donna Chambers Tue, 24 Jan 2012 00:33:57 +0000 http://www.curesf.org/?p=6750#comment-2586 I enjoyed your article, and appreciated the mention! I did have a couple of things I wanted to share some additional information on: A blanket with added polyfil is actually more breathable than one without. Polyfil also muffles the slight sound of the shifting poly pellets that does bother some users. A quality product will not bunch. Only children under 1 year of age, or users who cannot remove the blanket on their own would be in danger of suffocation. (we ask our customers buying smaller blankets if they are for a child under 1, and we give a warning about making sure all users can remove the blanket on their own) We offer blankets with and without polyfil....and our customers overwhelmingly prefer them with. Also, the weight formula should change for each size of blanket. The larger it is, the more spread out the weight will be. 7 lbs in a 3x5 blanket, a 5x7 blanket, or a 10x12 blanket will each feel very different to the user. Craft Nectar has the VERY BEST DIY pattern I have seen....if you have the time and patience to make your own, that's the one I would recommend! I enjoyed your article, and appreciated the mention! I did have a couple of things I wanted to share some additional information on:

A blanket with added polyfil is actually more breathable than one without. Polyfil also muffles the slight sound of the shifting poly pellets that does bother some users. A quality product will not bunch. Only children under 1 year of age, or users who cannot remove the blanket on their own would be in danger of suffocation. (we ask our customers buying smaller blankets if they are for a child under 1, and we give a warning about making sure all users can remove the blanket on their own) We offer blankets with and without polyfil….and our customers overwhelmingly prefer them with.

Also, the weight formula should change for each size of blanket. The larger it is, the more spread out the weight will be. 7 lbs in a 3×5 blanket, a 5×7 blanket, or a 10×12 blanket will each feel very different to the user.

Craft Nectar has the VERY BEST DIY pattern I have seen….if you have the time and patience to make your own, that’s the one I would recommend!

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