Brooklyns Path to Medical Therapy and Equiptment
Donation protected
Accessibility and Medical Needs for Brooklyn:
When Brooklyn was diagnosed with autism at 22 months old, we were determined to learn, understand and help her any way necessary. However, we had no idea the path would be a constant series of battles against a world ill equipped to accommodate. Battles with insurance, with therapy centers, with schools, with doctors; just to ensure our daughter receives the care she needs and deserves, accessibility, medical resources/needs, therapies- the list goes on. Before kids, I was shy and soft spoken, holding an unease with speaking up to those in “authority” positions or standing my ground. I now have a voice to be heard, that speaks loudly and persistently, fighting for what my child(ren) deserves; because I have to be her voice when she can’t communicate her needs. When she doesn’t feel good or is in pain, the doctors determine that I am an overly dramatic mother, and discharge her with no regard. Discounting her, simply due to her not being able to verbally express the commonly asked question “What seems to be going on?” Or “what hurts?”. As soon as I answer for her, and inform them she is unable to communicate that, you can almost see the eye roll or exasperated look that instantly consumes their expression. Sometimes, it takes me taking her to multiple physicians and clinics before someone actually listens. Because most of the time, she can’t even communicate what is wrong with us; we observe her shifts in behavior and are able to distinguish based on a variety of aspects what could be wrong. Multiple times in the last year this happened. One instance, taking her to the ER and doctor multiple times a day for almost a week straight with a extremely high fever, extreme fatigue and knowing that it wasn’t just a cold. I begged several doctors to test Brooklyn for everything, namely strep (it’s in the doctor notes for discharge “mom persistently requested for rapid tests for Covid, flu, RSV and strep to be preformed. Patient shows no need for testing”), and they determined it wasn’t necessary. Brooklyn became extremely dehydrated and weak, barely able to open her eyes. Daily I would make appointments with one of her many doctors and go to the er; desperate, all with the same result. Discharge and rest, just wait it out. Finally, after 6 days of this, I had a doctor listen to me, do the simple tests and immediately it came back positive for strep. Thankfully, she was immediately put on strong antibiotics and within 2 days was able to eat and drink and keep her eyes open. Another major medical issue that took months for a doctor to listen to, was her rapid behavior and demeanor change which involved hitting her head extremely hard, slamming her head into the ground full force, putting extreme pressure on her eyes and trying to claw her eyes out. It was devastating. Watching her in so much pain and being helpless, just trying to keep her safe and help her through her anguish, taking her to multiple doctors trying to determine the issue, and all of them decided it was just a new behavior or redirected self injurious behaviors as a result of autism. Finally, Brooklyn was able to cry to me one evening after a disastrous meltdown, two simple words “head hurt”. This sent me on a rampage with a new determination that I was going to make someone do something, a spoked fire that was not going to burn out, but rather burn down anyone that discounted my daughter again. Finally, a doctor heard me, and decided that they would be preforming imaging, imaging that revealed what was causing some of the pain- flattening of her optic nerve due to an undetermined cause, and a middle ear issue. Advocating for my child’s needs, is something I never had in my plan, but is now is something I have learned to do to the best of my ability and almost a daily occurrence. It can be an exhausting and isolating course. It is disheartening how many battles we face just to get her basic care or needs that she deserves, yet is disregarded due to her inability to effectively communicate her needs on her own.
Entering parenthood, we always knew we would do absolutely anything and everything for the children we longed for so deeply. Give our all to make their lives better and always have them feel the deep love we carry for them. Though, nobody can prepare a parent for the journey that instantly changes your plans, direction and parenting approach that a diagnosis of autism will lead. It’s so vastly different for each family, because the spectrum is so large and each child and circumstances unique. The diagnosis left us with a sense of grief, not a grief for our child, but a grief so deep knowing the hardships that she will inevitably face in a world that treats those with any differences at times harshly or with a lack of understanding. A sense of grief with the knowledge that she will have a hard time doing and learning how to do some of the basic things we can take for granted, such as communicating, learning self care or basic safety. We already knew we would do anything and everything we could to help make any aspect of her life easier, help her by learning alongside her in various forms of therapies in order to implement them at home, do everything possible to help her reach her goals. I constantly am researching any new resources, tools, therapies, research studies, medical journals and information; determined to not miss anything that we could do to assist Brooklyn in her life journey. Through this research, I stumbled upon stem cell therapy. Deep diving into the topic, I spent months watching families videos that documented their personal experiences regarding stem cell therapy in autism, read studies, medical journals and anything I could find on the topic. I knew we had to pursue this. Upon speaking to her doctor, he informed us that another family he has did pursue this as well and have shown remarkable results, though insurance will not approve any such therapy for autism. We know there is no guarantee and it isn’t a “cure”, that isn’t what we are looking for. We are looking at the potential, more so the hope, that this will help make any aspect of her life easier, happier. Which could lead to a domino effect of progress in other area. For example, even if this form of therapy simply helps with her extreme sleep issues; this could help her become more alert and aware during the day, easing her extreme fatigue and regulating her. Allowing her the ability to tolerate more, absorb more information, give her the ability to sit and attend to task (learning activities), help with extreme sensory seeking behaviors, become more willing to tolerate transitions (something that happens hundreds of times a day naturally for most). An increase in tolerance would mean that she could learn more information, progressing her educational abilities. It could mean the ability to go on a family outing with multiple transitions, and being able to tolerate it and even enjoy it. It could mean that the constant state of exhaustion that we face everyday from the sleepless nights, come to an end. We have contacted a clinic in Florida, that was opened by a doctor- a man, a father, that has a son with an autism diagnosis. His son has recieved the stem cell therapy multiple times and it has changed his life. Because this treatment is not covered by insurance, it comes with a heavy price tag. A price tag nearing $20,000. It was yet another blow to our hopes and our hearts. Something that would or could be so beneficial to her, yet out of reach. We’ve felt this despair before, with the private autism school priced at $6000 a month, with tools needed and prescribed with detailed information regarding why Brooklyn needs the item prescribed and it being denied. It’s a feeling, as a parent, that you never want to feel. Wanting to give your child not just the best things as things are replaceable and outgrown, but the best chance at the best life possible, the easiest life, the most independent life and the happiest life. Knowing that the possibility of help could be in this therapy, and having a deep sense of hope for betterment for our child, we have to do whatever it takes to give this therapy a shot. Clinging to a deep hope and desire or making any aspect of her life remotely easier, we come to you, our friends and family, our community and village, those that have a desire to help a child with the possibilities and potential that this medical therapy could achieve. We come to you asking if you have a desire to contribute to this, that we are forever and indescribably appreciative, and could never express the depths of our gratitude of any donation; as all of them count! Brooklyn works so hard at everything in her life, every single day, and she has worked every single day, all day, at just trying to understand a world she gets so over stimulated in. She puts in full time hours at a variety of therapies, trying to learn how to communicate in various effective forms, learning how to successfully interact with peers, learning how to better tolerate transitions and over stimulating environments. Learning how to play with peers and take turns, learning how to wait, learning basic safety. We are calling out to anyone that clings to hope, and that believes that even the hope of making Brooklyns life easier in any aspect, is a worthwhile cause. We have created this GoFund Me to help reach our goal and believe that this path is one meant to pursue. Donations can also be accepted via PayPal or Venmo and you will forever be considered one of #BrooklynsBESTies. Brooklyn is the strongest, bravest, most fierce, resilient, incredible and intelligent little girl, and I am profoundly blessed to have the priveledge of being her mother.
We are including a few medical items in our fundraiser that we have been prescribed and denied by insurance, even after appeals and an abundance of doctors statements and files deeming why these items are medically necessary due to extreme safety issues. We have provided links to these items as well. A secure sleeping environment and a safe place for aggressive meltdowns to occurs, and a mobility device to help with tolerating any outing and ensure safety in busy environments, near roads and in parking lots.
We are also including links with information on stem cell therapies and the clinic that we hope to visit in the near future!
Thank you all for your thoughts, prayers, hopes, well wishes and donations; all of which we hold gratitude for.
Organizer
Jessica Bradley
Organizer
Lakeside, CA