If you are new to PFFD - I recommend starting with the PFFD book

Tibia Hememelia

Does anyone have a child with Tibia Hememelia? Where you given options or only ampuation?

MY SON

MY SON IS THREE AND A HALF AND HAS PFFD IN HIS RIGHT LEG. HE HAS A SPLINT THAT HELPS HIM WALK AND APART FROM HAVING A SLIGHT LIMP YOU WOULDN'T THINK THERE WAS ANYTHIN WRONG WITH HIS LEG. THE HOSPITAL HAS ADVISED US TO AMPUTATE HIS FOOT FOR COSMETIC REASONS CAUSE HIS FOOT WILL GET TO BIG FOR HIS SPLINT BUT I CANT GET MY HEAD ROUND BEING THE ONE TO TAKE AWAY HIS FOOT. HIS RIGHT LEG IS FIVE INCHES SHORTER.I WOULD REALLY APPRECIATE ANY ADVISE ON WETHER YOU DECIDED TO AMPUTATE OR LENGHTEN YOUR CHILDRENS LEG. AND IF YOU DECIDED TO GO WITH LENGHTENING HOW MUCH PAIN WAS YOUR CHILD IN. THANKS. MY EMAIL

Free/Discounted Flights for medical need

A while back I mentioned that I would post information that I found on free and/or discounted flights for children with medical need and their family to utilize for doctor visits, etc.

I originally found this information about free flights online after my Aunt (a physical therapist) tipped me off that such organizations existed.

The information listed below are major airlines that offer these programs that I think would work for children with PFFD and their families. As I have not worked with each of these airlines I can NOT vouch that each of them will work, but I think that they might and it can never hurt to try! One disclaimer is that the airline will probably charge a small processing fee (around $5 per ticket) even though the actual airfare is free.

newborn

Our son is just 7 weeks old and has been diagnosed with both tibia hememlia and pffd. We will need to amputate at a year of age. This is our first child. How did everyone come to except this outcome of their situations. even though we knew of this inutero it is so hard to hear.

Finding Nemo

Hello everyone. Not sure how many of you here have seen Finding Nemo but I just saw it for the first time and I think it is such a great movie for our kids to watch. Nemo was born with a smaller fin, he calls it his "lucky fin" and the movie shows how he can do everything he wants to even with the short fin. It also shows us parents how to let go and trust that our precious little angels can do anything and everything they want. I think it is a great movie to watch with your children. Just thought I would share.

Maria

Ethan's Visit to Dr. Paley - June

My son Ethan (almost 2) will be going for his first visit to see Dr. Paley in June. I have recently been talking with some individuals on the Yahoo site who have given me a bit of advice on what to expect, think about, etc. for this visit. However, I am still hoping that others will be able to give me advice as well. If anyone out there can provide information I would appreciate it.

Also, later I will be posting some information on flight assistance for children who need to fly for their medical treatments.

Two year old with Class A/B PFFD

Hi,
My son has class A or B, a shortened left femur with a fairly stable knee and good ankle. He has an expected discrepancy of 6 to 7 inches at maturity. We have been told he needs a hip surgery before he turns three years of age to stablize his hip. Then have three separate leg lengthening surgeries each probaly three years apart. We are now battling with our insurance company because they want us to stay in NY state and go to doctors who perform one or two of these surgeries per year, and not often on children with PFFD. We consulted with doctor Herzenberg at the Leg Lengthening center in Baltimore who does 3,000 of these sugeries a year, and really feel much more comfortable with him.

Child v's Doctors

Does anyones elses child refuse to be examined by a doctor, and if so how do you combat it?

Toms hospital appointment

Well hello everyone, havent posted for a very long time on this /or the old site.

Just to let you know Tom has turned 4 and doing very well with his Prostesis extension, he can do anything and everything(especially things he really shouldnt be doing).

We went to see the docs for our 6 monthly and there taking Tom inunder GA to do an Arthrography of his hips,, which apparently is a easy procedure to see whats happening.

HAs anyone else been through one of these?
hope everyone is well
Oh i intend to write a personal story at some point but at the moment my newborn is making it rather difficult!!!

Book in Progress!!

Hi everybody!

I just had to share what I did!! I finished the book!!!!! YEA!! I just pray that it helps so many out there...and, future parents and children as well!! The book includes children with PFFD and other limb/extremity differences. I have to say...it's beautiful!! Thank you, soooo much, to those who submitted pictures! I sent copies to literary agents and publishers earlier this week. I have no idea how long it will take from here. It is so inspiring...even to me, who already knows how amazing our children are!! I just had to share!!!

Libbi

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