Happy Sweet 16 Dear Princess!!

[LiveWhatULove]

Aww, happy birthday to her! Sweet 16! It goes so fast.

[Tigress22304]

Awwwww! Happy birthday to her! Glad to hear she had a great day! ❤

Thank goodness she hasn't had to go the amputation route so far. I remember you talking about trying to get that leg to heal a couple of years ago. I can't imagine what that poor kid goes through and how hard it is for you to watch.

Thanx for the update, and hope she's stable going forward.

From what I understand from speaking to specialists-the fact that she even still has her leg at this age is a miracle.
There's a specialist from the Middle East that flies over to Philadelphia Shriners Hospital and he said 1 out of 3 kids has a form of pseudarthrosis and by the time they hit 8-10 they lose the limb.

Now because of her having the PradarWilli Syndrome-she's heavily obese.
She uses mobility aids to get around-however her leg will never heal.

The bone has knitted however the most it's been is 25% healed.
So they inserted a rod to hold the bone together-its due to be replaced/upgraded soon.

I would love for her leg to heal...but that'll never happen.


It's heartbreaking all she knows is pain however she never lets it show <3
She's always been a happy child.
I do appreciate all the love and well wishes-thank you V!

[stilltfez]

1729602ebd8e2afb60de3c3a99f3fb12_28-collection-of-snoopy-birthday-clipart-high-quality-free-_200-200.jpeg (12.32 KiB) Viewed 261 times

Happy belated birthday!!

[Lotus]

Okay so some of you know me from CM because of my daughter "Princess" who was born with a congenital brittle bone disease, and has developmental delays.

From time to time-many ask about her and how she's doing.
Princess is still the same sweet silly smiley Princess we all know and love!

Today marks her Sweet 16th Birthday.

Let's just say-she had a fantastic day with her parents and loved ones.

She's currently in her bed decompressing from her big day.

I can still remember when she was born
I'm not ready to admit she's nearly an adult.


Carry on.

Happy Birthday Princess! XOXOXO

[Anonymous 3]

Happy Birthday!

[Anonymous 1]

Which type and gene?

Are you asking about the type of disease?
It's called pseuduarthrosis of the tibia
pseuda is Latin for false
arthrosis is Latin for joint.

It's when you break a bone and it creates a false joint.
The chances of her ever healing are very low.

We are facing possible amputation and prosthetics.

She was misdiagnosed with developmental delays on the autism spectrum
but was recently diagnosed with PradarWilli Syndrome.

It's got to do with a missing gene from the paternal parent.
I'm still learning about this syndrome and from what I understand-its a lifelong battle with obesity/food.

No, what type of OI. Pseudarthrosis of the tibia can be associated with OI, but it isn't a type of it. OI is caused by a defective gene, different types are caused by different genes. OI has nothing to do with Pradar-Willi Syndrome, though that is also genetic, so that would be in addition to, not caused by the OI.

[Vegaswife2011]

Happy Birthday Princess

[SeekingPeace]

Oh my word! I can't believe she's 16 already!

Please make sure she sees all these HAPPY BIRTHDAY greetings, Tigress!

Happy Birthday, Princess!

[Tigress22304]

160953-Snoopy-Happy-Birthday.jpgBirthday-Quotes-Snoopy-birthday-ca.jpg76386d3c12b16eb9234aa66ff5a91e9c.jpg1729602ebd8e2afb60de3c3a99f3fb12_28-collection-of-snoopy-birthday-clipart-high-quality-free-_200-200.jpegHappy belated birthday!!

I showed her and she said
"Grammy Tia is the best"

[Tigress22304]

Oh my word! I can't believe she's 16 already!

Please make sure she sees all these HAPPY BIRTHDAY greetings, Tigress!

Happy Birthday, Princess!

I have been-she just laughs and giggles at all the gifs and love.

She is just tickled with all the birthday wishes and appreciates them all!