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Help Presley Run

$29,376 of $40,000 goal

Raised by 368 people in 11 months
Created February 7, 2018


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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Update 10
Posted by Lakia Rios
1 day ago
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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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Update 9
Posted by Lakia Rios
1 day ago
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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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Update 8
Posted by Lakia Rios
7 days ago
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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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Update 7
Posted by Lakia Rios
26 days ago
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Happy holidays...
The NYPD Football Game was such a success. We are so appreciative to everyone who participated. So much is happening and we are making many preparations for Florida. A few weeks ago we were invited to meet the PD commissioner and he was so attentive and welcoming to our family, at this meeting we were presented with a check from proceeds of the game. With the help of all of you I'm happy to share that we have exceeded our goal. I am so appreciative for all you’ve done on our behalf. Presley is thriving in growth, and even more in personality. She was recently casted for her winter braces as she has out grown her lasts. Due to her condition she has to wear them on both sides now. The second one is to prevent her longer leg from being too flat foot due to the weight distributtion. It also helps protect her ankle . Her length discrepancy has unfortunately increased however we are still just under 15% in difference. We are flying out to Florida in January, where we will see the facility, get some updated x-rays, meet the PT team, we will also get a child life tour of the hospital. I'm mostly looking forward to meeting family's who are going through the same process we will be going through very soon. We are also going see what our options are for housing during the duration of the process, as we would really like to have a rental in place during that time. Thanks again for your continued support and may your holidays be bless and safe.
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$29,376 of $40,000 goal

Raised by 368 people in 11 months
Created February 7, 2018
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