Rory's Little Leg: Growing bone!

$7,785 of $20,000 goal

Raised by 113 people in 55 months


My daughter, Rory, is 4 years old and was born on with an extremely rare birth defect called Congenital Femoral Deficiency (CFD), where her right leg doesn’t grow to the extent of her left leg. She currently has a 10 centimeter discrepancy and wears a shoe lift to help her walk. Because her condition is so rare she sees a limb lengthening surgeon 21 hours away in Florida. Dr. Dror Paley has created some of the surgeries she has had and will continue to have.

Rory has had 6 surgeries with Dr. Paley and will have her first (of 3) lengthening in November of 2014. At this time she will have an external fixator put on her leg: her femer will be cut and she will have multiple pins put into her bone. It is a 3.5-6 month in Florida recovery time (depending on her healing) with daily physical therapy in the Paley Advanced Limb Lengthening Institute, 3 times a day physical therapy in house, daily pin cleaning, daily pin turning, and follow up appointments and x-rays with her Dr. Paley and his staff.



In addition Rory, I also have an 18 month old daughter that will be relocating with me. My husband is currently working with his employer to try and stay with us as much as possible. We are learning that having a child with an external fixator is a full time job and there needs to be a 1:1 adult to child ratio. When you begin slacking on physical therapy and your daily duties is when problems can arise.




The funding we receive will only be spent on Rory's trips to Florida. For this lengthening, I would like to try to make it possible for my husband to stay with us as much as possible. If my husband can't be with us, I would like to have a family member come and help me with giving my daughters the best care that they need.

Thanks for you support!




+ Read More
We got her new brace! It looks great- there's a waist strap and it goes down to her foot... the first night is always the hardest...there was/is no sleep going on! Here's hoping she gets more used to it...since she has to wear it almost 24/7!

Surgery Tuesday....small surgery but still enough to make me nauseous!!! And one with zin and away from Jon....
+ Read More
Florida can't live without my girls...looks like her knee is in bad shape. We hope 6 months of 2 hour extensive therapy and a custom made brace will help avoid a major surgery. Please keep my family in your thoughts!
+ Read More
Hello friends- here is a current update on Rory. She's having straightening issues again. Poor girl, she can walk on it, but only for a little bit and she starts to hurt. So this week we are headed down to Florida. The tricky part is we aren't sure if we will be there for one week, or a few months. We will find all that out on her appointment. Just when we thought we were home...we have to leave again. Please keep her in your thoughts and pray it can be fixed non surgical! for more info...heres her website, or email me ! #roryisawesome #hopefullyitgetseasier
http://www.roryjane.com/2015/06/update-trip-to-dr-paley-this-week.html
+ Read More
We are home now! Since being home poor Rory has had a fever of 101.4. We switched her antibiotics and it went away...then her new antibiotic gave her a horrible upset stomach and then she broke out in hives. We stopped the antibiotics all together since her pin sites look good and we just hope the metal rod doesn't cause any infection.
+ Read More
Read a Previous Update
Be the first to leave a comment on this campaign.

$7,785 of $20,000 goal

Raised by 113 people in 55 months
Created September 25, 2014
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
KD
$25
Kristen Daffron
45 months ago (Monthly Donation)
KD
$25
Kristen Daffron
46 months ago (Monthly Donation)
$25
Anonymous
46 months ago
MT
$100
Meghan Torno
48 months ago

My little guy, Ian, is always sending lots of love Rory's way :)

$20
Anonymous
48 months ago
$20
Anonymous
48 months ago
AT
$150
Allen and Stacy Thorne
48 months ago

Praying for continued healing and blessings upon Rory and the entire family... We are so blessed to have gotten to know you!

$25
Anonymous
49 months ago
$25
Anonymous
50 months ago
Be the first to leave a comment on this campaign.
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.