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Help Presley Run

$29,426 of $40,000 goal

Raised by 369 people in 13 months


Presley Madison Rios

Presley was born prematurely at 26 wks 13 inches & 2lbs .  She was found to have intraventricular hemorrhage (IVH) on both sides of her brain (grades 3 and 4 which are the most severe brain bleeds). At 16 weeks pregnant we were told that the baby’s left leg stop growing in comparison to her right. We were told it would likely be amputated at birth.
(A misdiagnoses as we know now, it was Posteromedical Bowing) 

At birth her left foot was severely deformed however we were lucky and did not have to opt for amputation. We now know her official diagnosis is Posteromedical Bowing of the tibia and fibula. The bowing of the tibia and (heel bone) foot is severely deformed. There’s also some deformity in the ankle , which is causing little flexibility to point downward, also hindering her ability to walk, stand and sit well balanced.

We are blessed to reveal today that both sided brain hemorrhages are mostly healed and little wear shows up on the ultrasounds every month since their discovery. We are aware that the permanent effects of her brain damage may not be evident until she’s closer to school age which is why we really need  her leg corrected before then.  

Presley is alert and aware of everything, she is very vibrant and happy. She is eager to move around and explore, however she is limited due to the leg length discrepancy .  Problems caused by leg length discrepancy usually include physical problems, both structural and functional and even emotional issues. The long term affects of having this deformity include scoliosis, severe spine and hip disfunction and life long joint and back pain. 

  The Paley Institute in West Palm Springs, Florida specializes in correcting limb deformities.  It’s the only place that has a full facility capable of both correcting her deformity and providng the necessary therapy during her early childhood years. Our goal is to move foward with surgery Summer 2019.

We would have to spend 8-10 weeks  time in Florida  for the initial placement of the fixator.  As many of you know my husbands job is demanding and he will  need to fly back and forth many times during the process,  which will take at least 9 months long pending there are no complications.  Every child’s recovery varies with time.  When she’s finally stable from the initial surgery she will have therapy in Florida for about 6-8 weeks. Once the fixator is set we will return to NY and have to travel back and fourth over the course of the next four months to allow fixator to lenghthen her leg. Once desired length occurs we will return to Florida for surgery to remove device and Presley will then have to be casted for another 6-8 weeks. Finally, we will return for cast removal.     

With all of this said, we are now in need as much help as possible.  We are humbly asking for donations to assist with covering out of pocket expenses for the surgery which include, medical equipment, deductibles , co pays, travel, and lodging cost. Our overall goal is to raise $40,000.00 to help with related expenses.   Please help us reach our goal!!

Thank you all for taking the time to read and learn about Presley’s condition as well as supporting our family during a very difficult time. Below is a link which gives  insight to   the  lengthening process at Paley Institute.  We know that a lot of you have been through tough times as well.  Anything you can contribute will help.  We are very thankful and they appreciate all of your prayers, love, and support!!

https://youtu.be/ANUuT387veY




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Hello all, it was an eventful trip. We arrived at Paley at St Marys Hospital and they performed some routine x-rays (see above) .
The Institute itself was bright, the campus was beautiful and the medical staff was super friendly.

Upon seeing the doctor and having him examine her overall progress, I am elated to disclose that he decided that we should postpone her surgery based on how well her overall ankle and bowing are correcting with her growth.

The explanation given to us was that there are two issues with posteromedial bowing- 1. limb length 2. Impact on the ankle causing a discrepancy in tibia and fibula growth. Where only the ankle is impacted the limb lengthening should be performed as soon as possible correct both the length and the ankle.

Presley has no issue with her ankle and the bowing of the tibia is miraculously nearly fully corrected. Therefore since length is the only real issue, and it can be done with more accuracy and less issues when she's about 3.5 years old (next summer). At this age she will be better able to comprehend and not be as apprehensive to the process. The doctors will determine the exact amount of predicted discrepancy and depending on how much shorter her tibia is, there is a possibility that they may be able to correct it with an internal rod ( Precice 2) instead of the fixator on the outside.

https://paleyinstitute.org/centers-of-excellence/stature-lengthening/the-precice/

There is much less scarring and pain; overall not as aggressive than the external fixator. I’m not going to get my hopes up about this possibility however that would be a much better road to take. She will continue to wear her lift and get them adjusted as needed until then. Overall this news is a blessing.

I know that she isn’t out of the woods and surgery is still necessary however I am so grateful that we get to continue seeing our girl move into her toddler years, flourishing, growing, and hopping around like the happy child that she is . We are so grateful for the continued prayers and will continue to keep you up to date with her condition. Thank you
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For Presley’s Birthday we ask that you pray that our Heavenly Father keep us in the right path and that we are guided to make the best decisions during not only her upcoming appointments but for the duration of the upcoming process. We are off to Florida this week
Happy 2nd
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Please keep us in prayer by asking our Heavenly Father that he guide our fourth coming decisions and that he keeps us in the right path!
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Happy New Year... 2019 Here we go

I’m especially thankful for:

1. Thanks to God’s grace my children’s overall health, which I know is a precious gift and I don’t take for granted. The continuous support of my loving husband.

2. Time – I often say, “time is bittersweet,” but the great privilege of being able to choose how I spend my time is an enormous gift that I’m very grateful for this year. I get to be a wife, mom, daughter, and friend.

3. Inspiration. I’ve found inspiration everywhere this year especially from my friends who go through there own hardships and who's love has been limitless during this time, always open arms to cry on, there to listen, and hold me up now matter how down I have been.

Thank you 2018,
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$29,426 of $40,000 goal

Raised by 369 people in 13 months
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