My sister just sent me the article in the July 21 issue of People Magazine regarding Maya Albert and Lilly Stiernagle. I am 56 years old and have lived with PFFD my entire life -- when I was born the doctors told my parents I would not live, then that I would not walk and the best thing that my parents could do was to put me in an institution and forget about me. Obviously they did not! I have been married for 30 years, have a 24 year old son who is 6' 4" tall and I use NO prosthetics at all--other than a wheelchair for "long" jaunts -- like to a Super WalMart or the mall.
I do not know what classification of PFFD I might be -- but I do know that a normal life with PFFD is definitely possible. I would love to share my story with Maya and Lilly's parents. Hopefully, they read this blog and can reply.
Sheila McLaughlin
Comments
Reply to Sheila
Hi Sheila-
This is Jenny, Lilly's mother. It is great to hear about you and a little about your life. I would love to connect and talk some more about the yourself and share with you more about our daughter Lilly. We are so pleased to see you got the article...we were hoping this would open the doors for both us and the Albert's family and possible meet some other kids/teens/adults with PFFD. Please feel free to call...our home number is 507-787-2259. Thanks for the post here!!!
Love,
The Stiernagle's
:)
Sheila,
I am 30 years old and was born in a military hospital in the south. The doctors told my parents that I would never walk so they should just have my legs amputated! Thankfully my mother was horrified by that idea and said no. She was happy to have an otherwise healthy baby and the doctors thought she was crazy for not being more upset at having an "abnormal" child.
We showed them though! I can walk, dance, ride a bike. As I get older I may have to have a wheelchair for "long jaunts" myself, but for now I try to enjoy the blessing of having two legs I can walk on!
Genevieve Kawamoto
P.S. Did you have many problems with pregnancy? My husband and I are going to start trying in the next couple of years and I worry about bed rest and kind of assume I will at least end up in a wheelchair for the last trimester.
PFFD
Hi Genevieve -- I just looked and saw your post -- sorry it took me a few days to respond. I had to stay off of my feet for approximately 7 1/2 months. Pretty much as soon as I got pregnant, my legs started to feel as if they had rubber bands around them all the time, so my doctor said "Go home, stay off your feet and you will have this baby." I gained 50 pounds (looked like one of those little weeble toys because my weight was all in the front) but I ended up having a 9 lb baby boy who was 22 1/2 inches long. It was hard because I have always worked and at that time my husband drove a truck long distance, but in the long run it was really worth it -- Conor is now 24 and on his own in San Diego CA and plans to be married next year.
It really can be done -- I was most excited to find out that PFFD is not genetic and have passed that on to my son and daughter in law to be --
My life has been charmed and definitely blessed. I am just so thrilled to finally just know what my condition (never did like the word Disability) is called. Your parents sound a lot like mine -- thank goodness each of us had very special people as our parents!
Please post again if you have any other questions. Best of everything to you!
Sheila McLaughlin
Pregnancy
With my first pregnancy, I was out of my prosthesis by 5 months, due to intense hip pain. That hip pain lasted until I gave birth. After the birth, it took a very long time (several months) until I could walk without hip pain. In my definitely-not-an-expert opinion, the hip pain could have been related to not having real hip joints? I know that during pregnancy, your hips shift and I can imagine if the structure is unstable to begin with, it would be very easy for tissue/nerves/ligaments to get twisted around. The second time around I was walking & going to work full time until the day I gave birth. Maybe because by the second time around, everything was basically where is was going to be? I was very pleased to wear my prosthesis 2 days after my second birth. The deliveries themselves were very good with no complications. I did a lot of kneeling in labor on all fours... or threes, lol.
i cannot figure out if you got this the first time
Hi Genevieve -- I just looked and saw your post -- sorry it took me a few days to respond. I had to stay off of my feet for approximately 7 1/2 months. Pretty much as soon as I got pregnant, my legs started to feel as if they had rubber bands around them all the time, so my doctor said "Go home, stay off your feet and you will have this baby." I gained 50 pounds (looked like one of those little weeble toys because my weight was all in the front) but I ended up having a 9 lb baby boy who was 22 1/2 inches long. It was hard because I have always worked and at that time my husband drove a truck long distance, but in the long run it was really worth it -- Conor is now 24 and on his own in San Diego CA and plans to be married next year.
It really can be done -- I was most excited to find out that PFFD is not genetic and have passed that on to my son and daughter in law to be --
My life has been charmed and definitely blessed. I am just so thrilled to finally just know what my condition (never did like the word Disability) is called. Your parents sound a lot like mine -- thank goodness each of us had very special people as our parents!
Please post again if you have any other questions. Best of everything to you!
Sheila McLaughlin