My son, Julian is seven years old. He has Bilateral PFFD and Bilateral Fibular Hemimelia. Right now he wears AFO's because he can walk and run just as good as any other kid. Any kind of lengthening or surgeries is in the future at this point. But because he is seven and in school he is becoming more aware of the difference in heights between his classmates and himself.
I was hoping that there is another child in the same age range that would be a pen pal or email pal to my son.
You can respond to this thread or message me for our contact information.
Thank you!!
Emily Guerra
Pen pal
Hi there
My daughter is only 2 but you should join our PFFD Facebook page you will find lots there!
Pen pal
Hey Emily!!! I also strongly encourage you to join the fb page but I can also find you a pen pal. I will ask around tomorrow at clinic and see who we can match you with. I have been a Paley patient for 22 years and just had my last surgery July 3rd. We have done 21 inches and a hip and knee replacement. Finally 2 feet on the floor and learning to walk!! I have a little buddy with bilateral tibia hememila but he's only 2 and a half so too young to write! But there are some awesome kids I have met down here this summer that I'm sure would love to help. Will you email me your contact info so I can pass it along to his pen pal?? My email is rebeccah11287@yahoo.com. Also, I want to give you my best piece of advice as an adult who has gone through all this - treat your child like a child. Not like he is breakable or different. Yes, be there when he needs it but let him do as much as he possibly can!!!! We are special kids, this group, and we are strong!
Pen Pal
Hey- I have the name and email for an email pen pal for you!! Can you email me for it? Rebeccah 11287 at yahoo dot com without the spaces and all!