Medically Adapted Home
Donation protected
We talk about miracles like they are few and far between, but in fact I’ve been able to witness one everyday of my life.
My little sister, Brianna was born with a bleed on her brain, she was a twin but unfortunately our sister passed away. Brianna has surpassed every goal that's come her way. She's 27 ears old, happy, and the sweetest person you'll ever have the pleasure of meeting. She is formally diagnosed with Cerebral palsy, Scoliosis, Chronic Lung Disease, and Restricted Airway Disease. She is unable to walk, fully talk and her independence depends entirely on my mother and I. She uses a Wheelchair, Hoyer lift, Suction, CPAP and is supported by Oxygen and other supplemental medical equipment and medications to live her daily life the healthiest she can be. As you can imagine medically fragile children require 24/7 love. Brianna cannot be left alone, we receive limited funding to cover a nurse to help and her insurance pays for the absolute bare minimum equipment. They do not cover adaptations to the home in any manner or anything they do not deem medically important to them. If only they could take a walk in our shoes and see the importance of quality of life. It’s something we so easily take for granted.
We pay for many things out of pocket such as diapers, wipes, pads, chucks, and other incontinence products. We finally have a wheelchair equipped van so we can travel safely to appointments and pay monthly for that as well. Many people are under the impression because you have a disabled child that things come at no cost, or insurance pays for everything. From personal experience this is not true and everything is a struggle with insurance, getting certain equipped covered and having the best to meet her high needs. We no longer receive therapies because insurance will not support it stating she is "Not rehab-able." It's rather frustrating to myself as I am a special education teacher and see the impact on both a personal and professional level that special needs families endure to simply meet their child's needs. It is my hope through this fund we can adapt our home and offer Brianna the best quality of life through accessibility, home therapies, and giving her body some ease through better access of the home. Please keep in mind this is not a new issue, growing up in various apartments we to faced these challenges and although the ADA requires places to be wheelchair accessible, they are in fact not meeting all wheelchair accessibility needs. For example, wide doorways, handicapped bathrooms and extra space for things such as under the sink to wash dishes. These are a few examples. Growing up we simply adapted but never realized what was out there to help us. Many said that owning a home was our only hope to create an accessible home, so here we are. Challenge after challenge, saving and working as a family we did it!
In August 2018, my mom purchased her first home, a DREAM come true. See, my mom is a single parent serving the role of mom, chef, grocery getter, nurse, and everything in between, I kid you not she does it all! We looked and looked and found the most beautiful home, that has in turn given us several issues in just a few short months. The air conditioning has been replaced, we found termites having needed to be destroyed and due to the infestation we have to replace the walls surrounding those areas. Despite all of those issues we rose above and stated we made the right decision to buy a home and will sort it out together because that's what family does . Within that same month of settling on her home and through all of these mishaps, Brianna ended up in ICU and once again fought for her life. Mom and I are getting back on our feet and have always promised to do whatever it takes to keep Brianna living her best life at home, but with that comes some necessities and high costs. Brianna is thankfully home and we are ready to work towards adapting things to further ease her life in their permanent home doing whatever it takes.
Mom and Brianna are both getting older, and I've vowed to always do anything I can for them. This time it is getting handicapped lift tracks installed in our home so Brianna can easily access the various areas of our home using a guided ceiling lift. These are permanent structures that are estimated to cost $8500.00 and up depending on the system and ease of use. So far we’ve had one company come out to give us a quote in hopes we could save up and another working to come in and assess. The structures will link her room, living room and the bathroom. Meaning Brianna can move in one trip from each area rather than having to push around the hoyer lift from room to room. On top of that we need to install ramps in the various sections entering and exiting the home, for safety and accessibility reaso such as a fire. I have already purchased 1 from amazon at $100.00 a piece. We also want to install a pool lift estimating $2500.00 for just the product if we order from a site such as Amazon, this doesn't include installation. The goal of having a pool lift is to allow exercise therapy in the pool as the water is the one place Brianna can truly move her body. This will help her legs, muscles and overall health as she is unable to exercise otherwise. The water allows her to be weightless and it's a beautiful thing seeing her smile when she has some control of her movements.
I realize we have a roof over our heads and so much love that we truly couldn't ask for more. Increased quality of life is something we so easily take for granted but by adding equipment for my sisters care , it would make a world of difference. Each day I wish I could trade places with her, and aim to make the best of my own abilities. My hopes are that this project is shared, and can help my sister and mom have some peace of mind in their new home through accessibility equipment and quality of life.
If anything we will spread awareness and show just what Brianna is capable of, overcome and how she has made an impact on this world, especially mine.
Thank you for taking the time to read our story. We truly appreciate it.
-The Larrabee Family
My little sister, Brianna was born with a bleed on her brain, she was a twin but unfortunately our sister passed away. Brianna has surpassed every goal that's come her way. She's 27 ears old, happy, and the sweetest person you'll ever have the pleasure of meeting. She is formally diagnosed with Cerebral palsy, Scoliosis, Chronic Lung Disease, and Restricted Airway Disease. She is unable to walk, fully talk and her independence depends entirely on my mother and I. She uses a Wheelchair, Hoyer lift, Suction, CPAP and is supported by Oxygen and other supplemental medical equipment and medications to live her daily life the healthiest she can be. As you can imagine medically fragile children require 24/7 love. Brianna cannot be left alone, we receive limited funding to cover a nurse to help and her insurance pays for the absolute bare minimum equipment. They do not cover adaptations to the home in any manner or anything they do not deem medically important to them. If only they could take a walk in our shoes and see the importance of quality of life. It’s something we so easily take for granted.
We pay for many things out of pocket such as diapers, wipes, pads, chucks, and other incontinence products. We finally have a wheelchair equipped van so we can travel safely to appointments and pay monthly for that as well. Many people are under the impression because you have a disabled child that things come at no cost, or insurance pays for everything. From personal experience this is not true and everything is a struggle with insurance, getting certain equipped covered and having the best to meet her high needs. We no longer receive therapies because insurance will not support it stating she is "Not rehab-able." It's rather frustrating to myself as I am a special education teacher and see the impact on both a personal and professional level that special needs families endure to simply meet their child's needs. It is my hope through this fund we can adapt our home and offer Brianna the best quality of life through accessibility, home therapies, and giving her body some ease through better access of the home. Please keep in mind this is not a new issue, growing up in various apartments we to faced these challenges and although the ADA requires places to be wheelchair accessible, they are in fact not meeting all wheelchair accessibility needs. For example, wide doorways, handicapped bathrooms and extra space for things such as under the sink to wash dishes. These are a few examples. Growing up we simply adapted but never realized what was out there to help us. Many said that owning a home was our only hope to create an accessible home, so here we are. Challenge after challenge, saving and working as a family we did it!
In August 2018, my mom purchased her first home, a DREAM come true. See, my mom is a single parent serving the role of mom, chef, grocery getter, nurse, and everything in between, I kid you not she does it all! We looked and looked and found the most beautiful home, that has in turn given us several issues in just a few short months. The air conditioning has been replaced, we found termites having needed to be destroyed and due to the infestation we have to replace the walls surrounding those areas. Despite all of those issues we rose above and stated we made the right decision to buy a home and will sort it out together because that's what family does . Within that same month of settling on her home and through all of these mishaps, Brianna ended up in ICU and once again fought for her life. Mom and I are getting back on our feet and have always promised to do whatever it takes to keep Brianna living her best life at home, but with that comes some necessities and high costs. Brianna is thankfully home and we are ready to work towards adapting things to further ease her life in their permanent home doing whatever it takes.
Mom and Brianna are both getting older, and I've vowed to always do anything I can for them. This time it is getting handicapped lift tracks installed in our home so Brianna can easily access the various areas of our home using a guided ceiling lift. These are permanent structures that are estimated to cost $8500.00 and up depending on the system and ease of use. So far we’ve had one company come out to give us a quote in hopes we could save up and another working to come in and assess. The structures will link her room, living room and the bathroom. Meaning Brianna can move in one trip from each area rather than having to push around the hoyer lift from room to room. On top of that we need to install ramps in the various sections entering and exiting the home, for safety and accessibility reaso such as a fire. I have already purchased 1 from amazon at $100.00 a piece. We also want to install a pool lift estimating $2500.00 for just the product if we order from a site such as Amazon, this doesn't include installation. The goal of having a pool lift is to allow exercise therapy in the pool as the water is the one place Brianna can truly move her body. This will help her legs, muscles and overall health as she is unable to exercise otherwise. The water allows her to be weightless and it's a beautiful thing seeing her smile when she has some control of her movements.
I realize we have a roof over our heads and so much love that we truly couldn't ask for more. Increased quality of life is something we so easily take for granted but by adding equipment for my sisters care , it would make a world of difference. Each day I wish I could trade places with her, and aim to make the best of my own abilities. My hopes are that this project is shared, and can help my sister and mom have some peace of mind in their new home through accessibility equipment and quality of life.
If anything we will spread awareness and show just what Brianna is capable of, overcome and how she has made an impact on this world, especially mine.
Thank you for taking the time to read our story. We truly appreciate it.
-The Larrabee Family
Organizer
Sarah Larrabee
Organizer
Jacksonville, FL
