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Help Presley Run

$26,786 of $40,000 goal

Raised by 345 people in 5 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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I wanted to take the time to thank our brothers in blue for all of the love and support you have shown by auction coins, donating and sending kind prayers our way. I would also like to thank SBA and PBA union for sharing our campaign, supporting our journey and being so willing to embrace our cause. To my local US pharmacy for sponsoring our Presley merchandise.

I would also like to acknowledge ShishkaBob Design for reminding everyone especially children to embrace their differences!! Bob is a normal working Dad who one day decided to make a home made AFO brace for his neighbors daughters’ doll so they could have the same differences and with his kind gesture this hobby took off. Today he donates thousands of braces for dolls and stuff animals to help make a small difference in the lives of children that have a very large challenge in front of them. Please check out Facebook page HelpPresletRun, thanks again
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Thank you for your support we are truly blessed to have come this far with our campaign. We received a call from the financial coordinator at the hospital, who advised us NYC health plan, it is in fact Out of Network for both hospital and physician and ultimately our out of pocket significantly increases. As a result we have decided to increase our goal since we have additional medical expenses. We know this is just another hurdle to overcome and we are confident we will continue to move forward.

Because of all of you Presley was casted, molded and fitted for her first AFO, it allows her to have support to her knee and give her the height she needs to be able to stay balanced. She’s still getting acclimated with her new equipment but she’s eager to run. She really has taught me so much about preservance, faith and determination. She is truly fearless and I’m proud to be able to share her journey with all of you. Thanks again .
Casting
First Day!!
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Our family wants to express our deepest appreciation for all of your generosity in support of Presley’s Campaign, we are in disbelief that today, 7 days into sharing her story you have raised $10,000. We were conflicted about starting this campaign either because of pride, self consciousness or just fear for what others may think. Then we realized that although she was born almost three months early, her very small stature fought hard, through respirators, tube feedings and three long months in the NICU and by God’s grace is here strong and feisty as ever with us today. Both my husband and I, owe it to her to make sure we do everything we can and persevere just as hard. However your conscious decision to personally commit to my family as if Presley belonged to all of you has been incredibly companionate and it is great not to feel alone on this journey. Your generosity is really humbling and we are so excited that we are a step closer to making this surgery happen. Thank you for your continued support and blessing from all of us.

The Rios Family
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$26,786 of $40,000 goal

Raised by 345 people in 5 months
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MA
$50
Mercedes Awadallah
11 days ago
$100
Anonymous
14 days ago
NP
$50
Nikki Prasad
25 days ago
TC
$100
Timothy Connell
28 days ago (Offline Donation)
JS
$20
Jack Simonelli
28 days ago (Offline Donation)
JR
$100
Joseph Roman
1 month ago
HC
$100
Henry Ciborowski
1 month ago
EA
$100
Erick Acevedo
1 month ago
AF
$100
Annette Figueroa
1 month ago
MB
$70
MELISSA BASS
1 month ago
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