Meet Gracie, the daughter of Dale and Leah Berry of Charleston, AR. Gracie and the family need our help more now than ever before. If you can donate, please give what you can, no amount is too small or too large. If you can't help with a contribution, please hit the share button and say a prayer for this family!!! First I'll tell you a little about Gracie's birth defect and current medical condition, then I'll explain what the family is going through right now. Gracie was born with a very rare birth defect called Bladder Exstrophy
What is bladder exstrophy?
Bladder exstrophy is a rare, complex birth defect involving the urinary, reproductive, and intestinal tracts, as well as the musculoskeletal system. During a baby’s development in the womb, the abdominal wall and underlying organs sometimes don’t fuse properly, and the infant is born with the bladder inside out and exposed on the outside of the body.
Bladder exstrophy usually involves several systems within the body, including:
- the urinary tract
- the reproductive tract (external genitalia)
- pelvic skeletal muscles and bones
- in rare cases, intestinal tracts are involved
Bladder exstrophy can result in weakened abdominal muscles and a shorter than average urethra and vagina or penis. It can present several associated challenges during care, including:
Below is a text O copied from the father, Dale, trying to explain it to her friends:
For those of you wondering of Gracies birth defect…at birth everyone knew something was wrong, but no one in the area had an understanding, so she was sent home as is…she was actually diagnosed later with bladder exstrophy…it has several different outcomes and is different for each person diagnosed, but for Gracie her ovaries and other internal items were inverted (1000 times easier for her to get pregnant), and her bladder was basically outside of her body because her abdominal wall didn’t close, nor was she born with the muscles to control the movement of her bladder…the best available care was through Dr John Gearheart at John’s Hopkins in Baltimore…once there, they had to break her hips and pelvis, reconstruct everything, and close her up and do some “retubing”….she was in traction for over three months…the hopes with bladder exstrophy patients is that their bladder continue to grow to the point they could basically build a muscle out of part of it, and all else would be okay…well, Gracie being Gracie just had to be special…after several trips to John’s Hopkins and several procedures it was just determined that her bladder was never going to grow…it never got larger than an infants or around 2ozs…when there’s no bladder, there’s nothing to build a muscle from…Dr Gearheart and his team have been amazing throughout these 18 years, but finally made the decisions to move to plan B because plan C, growing her a new bladder in the lab, is still several years down the road…during this time, Dr Kropp has trained extensively with Dr Gearheart, and has perfected plan B hundreds of times…he is the best of the best with this procedure…so what’s taking place today…?? Well, in basic, they are making her a bladder…in order to do so, they will open her bladder to the point it will look like an open bowl…they will then take a piece of intestine, and basically make an opposite copy of the bladder, so, there will be a top bowl turned over, and a bottom bowl married together…they will then close off her bladder exit, raise up her urethra tubes so there won’t be a back flow problem to her kidneys, then they will remove her appendix and use the tubing to place a stoma (a sealed up opening) inside her bellybutton (hopefully), and then she will be able to use her bladder with the ability to cathe via the stoma if needed….this is a long surgery and the recovery will be lengthy…she will be in the hospital the next 7-10 days recovering and learning what it’s like to feel your bladder full for the first time…after released, we will be moving next door for anywhere from 4-6 weeks until she heals enough to remove the 6-8 drain tubes she will be leaving with…we need to remain as close to the hospital as possible as if one of these drains stops up, it can ruin the entire process, and it’s a must we get it opened back up within 10-20 minutes…it’s something she has been excited for her entire life…she didn’t have a nerve one until the last few minutes when they came in and gave her some REALLY feel good juice…for those of you asking to visit, we just aren’t sure yet if it’s going to be possible as she will be wrapped and tubes everywhere and very little covering…we will get a room number as soon as we find one out for those wishing to send her anything during her stay at the hospital…for those of you wishing to send her a care package, as we don’t know how long our stay is going to be at each location, we’ve asked that you just send them to our home, 219 Church Street, Charleston, AR 72933, and we will have visiting relatives that are planning to bring pyper to visit bring those packages with them…sorry if it’s a long hard to understand post of her issues, but many have asked, and she’s been more than open about sharing…it’s one thing in life she’s never been allowed to use a crutch, nor has she been embarrassed of it or allowed it to slow her down…it will be anywhere between 7-10 days before she’s up for communicating, so please understand if she doesn’t answer or text back, she will be healing and will have time to talk down the road…thank you all for the years of support, and if you have any questions, ask Leah because I’m taking a week long nap….
It turns out Gracie has had a tpigged time with her current surgery than expected. Don't get me wrong, Gracie is one tough kiddo, and handling this like the champ she is!!! She comes to, just long enough to say, it's still all worth it.
The family has been thrown some huge curve balls these last few months. The family has had to move out of state, to the best hospital available to preform this surgery, Oklahoma. The family will have to live in Oklahoma for a minimum 2 months, leaving their youngest daughter back at home. Due to COVID and hospital regulations, ONLY MOM AND DAD ARE ALLOWED. The family has had to scrape up enough money for a new home just 3 miles from the hospital. The ONLY home available, just over $4000.00 per month, was an upstairs only the hospital has just informed the family that Gracie will not be able to make the walk up the flight of stairs. The family was not aware she will be leaving the hospital with around 8 drain tubes, and the family will be trained in maintaining these tubes. The rental property is not understanding to the medical situation, and not willing to help with any refunds to the family. The family is being told they now have a few days to find a new home with no stairs. Therefore the family is looking at a new rental for another 2 months. The family must also now be responsible for 2 hone payments, 2 utilities, with all bills, and being separated from their youngest daughter. The family will have to make countless trips back to Arkansas to help with Pyper, the you fest daughter.
The Berry family goes above and beyond to give back to their community. They put on and host a local Social Distance outdoor community Easter Egg hunt, A COMMUNITY FAVORITE!!!!! They make the best cookies in the world, always gifting to teachers and oir law enforcement, or other community workers, they donate and work concessions, our local fair, they work hands on with their church, trips for the youth. And just make themselves readily available to their community. To say the family is proud of them would be an understatement. There is nothing this family would not do for others. Leah is a teacher at their Local school district. Now, this family needs oir help, please????? If I had all the money they needed, I would not be asking for help, I'd gladly give it to them!!!!
Prior to Gracie's surgery, she insisted the Hosptals chapel open the Bible to Psalms 23 THE LORDS PRAYER. Please just continue to pray for Gracie and her family They need all the prayers they can get!
