It's me...Lilly's mom. I am finally getting x-mas cards out and would love to send one to anyone wanting one. Just email me your address...you can send it to our home email, if you wish. bjstiern5@bevcomm.net I made so many this year...better to have more then less, I guess. Thanks!!!
hi my name is amanda and my 6 month old daughter pheobe has pffd in her left leg so im new at this whole thing and still in the first stage of everything. as a mom i am having trouble with blaming myself (even though her dr at vanderbilt childrens hospitol said not to) i would just like to talk with other moms or others with the conditions about the whole thing. i guess i just need a little support.
Hi
I just join and read about Dr Paley leaving Sanai Hospital.My daughter is PFFD patient and has been treated by Paley for the past 8 years.He will be still in the Northeast area.You can ignore the letter you receive from the hospital.If you or a relative is being seen by Paley.you can contact him at dpaley@lengthning .us for more information.I already gave him personally my private contact info and I will follow him wherever he will be.
Fritz.
Anyone going to the save a limb ride in Baltimore on September 28th? That may be a good way for some of us to meet. We have gone every year since it started and it is a wonderful event with lots of games, food and fun. Here is the link:
I just opened a website for the children's book I wrote: Imagine...Amazing Me!
The book has photos of children with limb differences living a fun childhood and includes several of the children from this site!
The website is www.imagineamazingme.com. I set it up so people could see what is happening with the book and also, there is a page to print to order the book. Money is being donated to organizations that support children with limb differences.
This is Jenny, Lilly's mom. Since we are talking about convention, I thought I would pass along some links to a great facility in Stewartville, Minnesota. This is where Lilly attended National Wheelchair Sports Camp this summer and had a blast. The people here are so amazing the the scenery is great too. Check out the links to see it.
It has been a long time that I saw your post. The reason I am sending a line is that I am a left leg PFFD that have a birthdate in march of 1973 and spent 21 years going to the Shriners Hosptial in the Twin Cities in Minnesota and saw you were looking for information on just PFFD in general I hope this gets to the correct place for the correct people. I am not real experienced with the blog stuff and this type of stuff anyway. So if this gets to the correct people I would like to help you with anything I can.
The following is a speech that I wrote a few years ago when I was still doing Motivational Speaking. This speech has been given to kids elementary through high school. I thought perhaps anyone out there that is or has chilren with self esteem issues due to PFFD this could bring a little insight, and humor to your day.
"I have blonde hair and my friend has brown hair, but it JUST
DOESN’T MATTER! I am short and all my friends are taller than I am, but it JUST DOESN’T MATTER! My friend has blues eyes, you have brown eyes, but it (kids) JUST DOESN’T MATTER!
