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Little Miss Charlotte Barwell was born May 12 2014, at 32 weeks. After discovering she had quite severe respiratory distress, she stayed several weeks in the NICU at Athens Regional Medical Center. Shortly before turning a year old, we noticed that what we initially thought was just delayed development, was so much more than just that. We sought an opinion from several medical professionals and after our Neurologist suggested an MRI, our lives changed forever. Charlie has since been diagnosed with PVL, Periventricular leukomalacia, a brain injury (most likely birth related). Her initial diagnosis has since been narrowed to Spastic Diplegia Cerebral Palsy.
Charlie is, in most aspects, on the same playing field as other 3 year old children, but she has delayed speech and her mobility is significantly hindered by the Cerebral Palsy. Cerebral Palsy occurs when the brain is deprived of oxygen. In Charlie's case she was stuck in the birth canal and even a few moments with no oxygen can cause damage to the white matter in the brain. With Spastic Diplegia, this means that the signals from the brain to the muscles (lower body in this case) either aren't there all together or they are lost in transit. Resulting in very weak, very stiff muscles. It also disturbs the signals controlling Charlie's bowel and bladder. All of this means that Charlie will always struggle with the ability to walk, pain from stiff and weak muscles, and the inability to control her own private needs. Charlie needs daily Physical Therapy which we provide at home, but she also sees a professional Physical Therapist every week. If she doesn't get this therapy, she becomes extremely stiff and even waking up from a nap can be a painful ordeal. We were turned on to a very particular surgery called Selective Dorsal Rhizotomy, which will give her all of the opportunities to walk, lead a relatively relaxed and pain-free life and be able to use the bathroom unassisted.
The leading hospital for this type of surgery is St. Louis Children's Hospital in Missouri with Dr. T.S. Park. He is a world renowned doctor in this field and has performed over 3,500 of these surgeries. No other doctor is as recognized, as practiced and as innovative, or has a higher success rate (of 100%) then Dr. Park at the Center of Cerebral Palsy Spasticity at St. Louis Children’s Hospital in Missouri.
SDR begins with a 1- to 2-inch incision along the center of the lower back just above the waist. The spinous processes and a portion of the lamina are removed to expose the spinal cord and spinal nerves. Ultrasound and an x-ray locate the tip of the spinal cord. After the sensory nerves are exposed, each sensory nerve root is divided into 3-5 rootlets. Each rootlet is tested with EMG, which records electrical patterns in muscles. Rootlets are ranked from 1 (mild) to 4 (severe) for spasticity. The severely abnormal rootlets are cut. This technique is repeated for rootlets between spinal nerves L1 and S1/S2.
As with any surgery, there are risks. But following successful surgery and intense physical therapy, the rewards could be life changing for our beautiful little girl
Charlie! Charlie has been approved for SDR (Selective Dorsal Rhizotomy). This means that the Doctor there has reviewed her medical records, her x-rays, MRI and several videos of her performing certain tasks, and found that she is an excellent candidate! Insurance will only cover part of the surgery cost and very little of the intense physical therapy afterwards. 6-12 months of intense physical therapy is required to give the best possible results of surgery. This surgery is just another step in her journey to walk, and we are finding out that the expense is something we can't do alone. In addition to the surgery itself (along with travel, accommodations, food, equipment and several days of intense therapy), it is required that a follow up 4 month visit back to see Dr. Park at St. Louis Children’s Hospital is required and possibly a 1 year follow up. Additional surgery for heel cord extension is a possibility depending on what is discovered during the SDR, and she will potentially need hip surgery to help with an underdeveloped left hip socket. This is why we've decided to start fundraising now, so that we can give Charlie every benefit we possibly can! Our ultimate goal is to have Charlie walking independently, which is something that the Neurosurgeon believes is a strong possibility after the surgery. However, even without walking the other benefits from SDR are absolutely life changing. No more pain, no more botox injections, no more muscle relaxers and the ability to go to the bathroom on her own are ALL reason enough to go through with this surgery.
If you are able to donate, even in any small amount, to help make this surgery for Charlie possible and less stressful for our family, we would be eternally grateful! Any money raised will be used directly toward giving Charlie the opportunity to walk and any further medical needs or other surgeries she may need along the way!
Even if you cannot help financially, your thoughts and prayers would be greatly appreciated. This entire journey is so unknown for us. Everything is new and we are really learning things every single day. Charlie is such a strong and happy little girl, and being able to give her everything she deserves for a long and happy life is everything we dream of. Thank you for being a part of this adventure with us, we love and appreciate every single one of you!