Help Presley Run
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 $30,000.00 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!!
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
The Rios Family