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Help Bailey Walk and DANCE!

$9,330 of $30,000 goal

Raised by 113 people in 9 months
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Our Brave Bailey  #BaileyCPWarrior

 This is the story of our brave little 4 year old daughter, Bailey, who has cerebral palsy.  Bailey is kind, intelligent, and fiercely independent.  Even though her mobility is limited by a walker, she is determined to do everything that everyone else can do, no matter what.  Bailey dreams of doing all of the fun things that peers her age are doing, such as climbing on the monkey bars, swinging, rolling down a grassy hill, riding a bike, sitting with her legs crossed in front of her, exercising, and most of all…dancing.  This desire has led us to reach out to a neurosurgeon in St. Louis, MO who performs a life- altering surgery called Selective Dorsal Rhizotomy (SDR).  After doing loads of research, and speaking to parents who have had this surgery on their children, we have decided that this may be the best chance for Bailey, to help her combat some of the painful, lifelong impairments caused by this condition.  Dr. Park has predicted that, after this surgery, Bailey should be able to walk independently, across all environments which would be a dream come true!! 

Surgery is scheduled for January 29, 2019 in St. Louis, MO and we are SO excited!!!


Here is where you come in…

 A major, life-changing surgery like SDR comes with a large price tag.  The overall expected cost of this surgery (and braces/equipment is just over $46,000, which is WAY out of our budget.  We are expecting our insurance to pick up some of this, but since it is out of state, we don’t really know how much they will cover.  This is where we need your help!  As parents, we want to provide our children with as many possibilities and opportunities for success as possible, and this is our way of doing that for Bailey.  We want her to be able to live a life where she doesn’t have to rely on dangerous pharmaceuticals to get through the day, or have to worry about the deterioration of muscles as she gets older, and the pain this deterioration will cause.   

For more information about SDR, please refer to the St. Louis Children’s Hospital website ( http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr), which explains what Dr. T.S. Park does for these amazing kids.


Bailey's complete journey can be followed  by visiting my blog: https://baileyssdrjourney.blogspot.com/

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Well it has finally happened... our sweet Bailey has finally taken her first unassisted steps and we are SO excited!! She has worked SO hard for this and it has finally happened! The world is her oyster and we are so beyond excited to see where this amazing girl will go! We are a few weeks from going back to St. Louis for her 4 month surgical follow-up and can't wait to show Dr. Park how well she is doing! We are SO proud! We could still use a little bit of help for the trip and for continued therapies and such, so we would be eternally grateful for any donations/shares!! This little girl will move mountains!!!
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Good afternoon!! We are just under 3 months post-SDR and are SO grateful for the opportunities that we have been provided!! Bailey is working HARD in therapy 4x per week with her amazing therapists (with another 30-45 minutes of therapy at home daily), while swimming on Fridays and spending the weekends doing lots of FUN and therapeutic things like riding her bike (when the weather permits). We are still seeing SO many improvements every day. She is getting stronger every day and is getting much more daring. She has taken a few independent steps in the pool (when she doesn't realize that she's doing it independently) and is working really hard to be more comfortable using canes. We are still without medicine (which is a HUGE blessing!!) and she is adjusting to wearing her nighttime braces and knee immobilizers at night, which has been a challenge, but is getting much better.
We need your help!! We have made our flight arrangements to return to St. Louis for Bailey's 4 month surgical follow-up, and we have decided to stay for a week to allow Bailey to take a 1 week PT intensive, which consists of 2 hours per day of intensive PT with the Rhizotomy team. This will give Bailey a HUGE opportunity to do some different things with specialized therapists, and will give us some more ideas on how to best help Bailey with her therapy at home. Dr. Park recommended the intensive therapy as an additional measure to help her get stronger and that the 4 month follow up is the best time, and we agreed. We could really use some help to get us there and to help us live while we are there. Thank you for taking the time to read this update and keep up on sweet Bailey's progress!! We are SO grateful for all of the love and support that we have received throughout this whole process!!!
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We are almost 2 months post op, and the changes are incredible! Bailey can now swing on a swing set, which she was never able to do before without falling right out, she is getting better at using tripod canes, and she is enjoying her therapists SO much! We have added swimming to the mix which has been AMAZING! We are hoping to add hippotherapy (horse therapy) when the weather gets better. As we get closer to her 4 month follow-up, we are about to make travel arrangements to go back to see Dr. Park, and we still need some help with this (and her continued care including therapy and equipment). Luckily, it's only a few days this time, and not 2 full weeks, but St. Louis is expensive. Even with all of this financial stress, I wouldn't change this for the world. The amount of confidence Bailey exudes in her new abilities, and the little things that most people take for granted, are little blessings, and I know that we will keep seeing them! I can't wait to post the video of her walking on her own for the first time, but for now, we focus on the little things!!! Please donate/share if you can!! Help us make Bailey's dreams come true!!!
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Bailey's surgery was a success! It was a stressful few weeks, but everything went great! Now, the real work begins, with therapy 4-5x per week. We threw a wrench in the recovery by putting Bailey in casts to aid in heel cord stretching. This has made therapy/recovery a little bit harder, but she is a trooper. And our amazing therapists even cut out hearts to put on her cast for Valentine's day! SO AWESOME! We are still awaiting all of the medical bills to come through (EEK!!), new brace fitting, and therapy costs and have to also save up to go back the beginning of June for the follow-up with Dr. Park. St. Louis is an EXPENSIVE city! There will be a motorcycle ride for Bailey tomorrow called Baileys Ride to Dance. We'd love to see as many people as we can! Here is the link to the event page on facebook https://www.facebook.com/events/ical/upcoming/?uid=1436529239&key=AQAUq6LMAZ-OkB_e
Thank you SO much to everybody that has donated/shared/prayed for us! We ask that you please continue to donate/share and continue to pray for little Miss Bailey!
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$9,330 of $30,000 goal

Raised by 113 people in 9 months
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