Hello from Minnesota!!!
We recently have finished making a 2 dvd set showing McKenna's progress being treated for PFFD. These disks are the 4th version of this documentary that we have been sending around the world to families looking for information about PFFD. Now since we are not movie making professionals they are not the greatest as far as visual quality, or editing, but they do show McKenna before any treatment was done, then they show her after her first couple of surgeries to fix the "Bend" in her thigh bone. Then we included a video of McKenna at a doctors convention about PFFD which shows her initial xrays and Dr. Paley giving a brief description of her plan for treatment. After that we finish up with an interview with McKenna and show her today, at 8 years of age, after her 2nd lengthening. We also included 2 documentaries that show the lengthening process. These were done by news companies and they do show other cases of lengthening that don't involve PFFD, but the information shown is very useful, so we left those in too.
We made these disks to show families how things progress, and how our little McKenna talked, played, and felt during the ordeal. It is one thing to read about all the technical information, but sometimes a picture speaks a thousand words. Most parents just love the fact they can see that a child with this condition still walks, runs, laughs, climbs, plays, and overall is very happy. We will say that as time passes the technology used for limb lengthening changes quite rapidly, and each case of PFFD is different, so what you see on the tape may quickly be outdated, but the overall idea is the same.
Just email us your home address to ChuckBerg@msn.com, and we will mail you out a copy of the disks. We do apologize for the quality, as over time some of the VHS tapes we used for the initial copies have degraded a bit, but you will still get the basic information you are looking for. Our hope is that by sharing our story we can make things easier for parents and children that are new to PFFD. Combined with this wonderful website that has helped people from all over the world to get information, we hope that all children with PFFD can get all the help they need to live happy and healthy lives. We wish you all the best, and look forward to hearing from you soon!!!
Sincerely,
Chuck, Karla, Dylan & McKenna
Thank you for the DVD's
Chuck, Karla, Dylan & McKenna,
thank you for sending your DVD set to me over here in the UK, i really enjoyed watching them. They gave me a real insight into pffd and growing up with this condition. My memories of that age are very hazy!
Like you said a picture speaks a thousand words. McKenna is such a great kid, and takes it all in her stride. You are lucky parents.
The second DVD was extremely interesting, as I don't think there has ever been a programme on UK TV about pffd. Although leg lengthening was not an option for me, the documentaries shows the real benefits, and amazing results that leg lengthening can provide for both congenital deformities and trauma cases.
Thanks again, they were really appreciated.
Kind Regards
Dave Bailey
P.S. If any of you haven't yet asked Chuck & Karla for a copy of the DVD set, you should, they are well worth watching :-)
DVDs - Super Hip
I just watched the DVDs. They are great! For those of you considering the Super Hip procedure, watch these DVDs. One part shows the before and after x-rays of McKenna’s hip. Her hip after the Super Hip procedure looks like a perfect hip. It’s truly amazing.
Beth
Free of charge...
A quick update of some info. that I had left out of the original post. These DVDs we have been sending out are free of charge. We have been shipping them all over the world and so far none have come back, and there have been no issues watching these disks on different DVD players, so if you wish to see them just drop me an email at ChuckBerg@msn.com with the address you wish them shipped to, and we will do our best to get them out right away. I just used up my 100 disk DVD-R case and I am on the way to buy another stack. Also if you could please leave a note about what you liked/disliked about the disks we will try to fix whatever we can to make them the most useful. Also it keeps this link active so it will be easier for new users to find. The feedback and support from all the families has been just wonderful, and we want to thank you all for all the kind emails, letters and phone calls!!! It is what makes all this worth while, knowing that our little McKenna can help so many by being the little trooper that she is :) God bless you all!!!
Sincerely,
Chuck, Karla, Dylan & McKenna