A Ride For Taya Marie
Donation protected
Thank you for visiting Taya's fundraiser! Our goal is to replace our current vehicle with a handicap accessible van to be able to transport Taya more easily, safely and more frequently!
To those who have made a donation already or have shared to help spread the word, THANK YOU!!!
Hello everyone! Thank you for taking time to visit our Go Fund Me page, and for your interest in our story!I am Elizabeth. I am a 35 year old married mother of 3. I am starting a Go Fund Me for my oldest, my daughter, Taya Marie.
Taya is 12 years old now. She was born with a rare chromosome abnormality called Chromosome 18 Deletion. Or "18q-" I didn't know that she would be a special needs baby, and didn't find out that she had 18q- until she was 8 months old.
Her condition's characteristics, or symptoms vary from case to case, and can be severe in some cases, and mild in others. In Taya's case, she is left without the ability to walk, stand, sit up unassisted, crawl, or to get around on her own at all. She is severely cognitively impaired and does not speak. Though she was left mostly physically and mentally disabled, we are incredibly lucky that she has not had hardly any of the huge list of medical issues that can be caused by her 18q-. We have struggled with things like her growth and weight gain, extremely poor vision and glaucoma, issues with her hips caused by her inability to stand and walk, curvature of the spine, hypertonia (uncontrollably tight muscles) and mostly those are the major problems we have encountered over the last 12 years. All in all, Taya's life has been filled with a mixture of doctors poking and prodding at her, 18q- is rare and along with myself and her family, the doctors are learning from Taya and how she progresses along the way. She's had/has braces for her feet and legs, a brace for her back, braces for her hips, braces for her wrists and hands, a "stander" a gait trainer (walking device) special lifts, special seats, wheelchairs, special needs car seats, glasses, 4 different eye drops twice daily, medications daily, a G-Tube for supplemental nutrition, and so on and so fourth. We are always trying to come up with ideas to allow Taya to experience as many fun, exciting, and somewhat "normal" things that you would want any regular child to experience. Some of our ideas have failed, some have been great successes. At this time in our lives, Taya is happy, healthy, doing great things with her ability to communicate via new electronic devices, and making great progress everyday, and wowing her teachers, therapists, family and friends!
When I had my 2nd child, a son, back in 2005. Jameson, he was born weighing a ridiculous 10 pounds 4 ounces. During his pregnancy and birth, I suffered an injury to my spine, and ever since then, I have been dealing with back problems. I was diagnosed with degenerative disc disease, and spondolylisthesis in 2007 and under went surgery. It was discovered that during Jameson's delivery, I broke a vertebra, and 11 years later, it has not healed, and will stay the way it is for the rest of my life. Degenerative disc disease has left me with 1 repaired disc, and newly herniated discs keep popping up over time. I have found ways to cope with the pain of everyday life. Injections of cortisone have helped, and I lift Taya as little as possible. I have been very lucky to have a wonderful husband who does all of the lifting when he is home. I left work after having Taya in 2003 with intentions of returning once she was about 6 months old. After learning that Taya had such severe special needs, I have had to give up working. Sometimes Taya needs to stay home from school if she comes down with something, and that can last for a week straight or even more. Her differences cause her to take much longer to battle a simple cold than most other healthy kids.
The problem we are dealing with now is transportation. There is a program that, for qualifying families who have a severely disabled child, reimburse up to $10,000 for a vehicle, up to $10,000 for making a vehicle handicap accessible, and up to $10,000 to have renovations in your home to accommodate a handicapped person. These are 1 time only. You get 1 shot at getting a vehicle, 1 shot at having a lift installed, and 1 shot at home renovations. You don't get a 2nd chance. Taya's father and I ended up buying the van that I currently transport Taya in, and were reimbursed for the amount we paid. We picked a van that we intended to add a wheelchair lift into at a later date. We would have to pay to have this done to the van and then apply for the reimbursement after, not knowing if we would even be approved. We decided to wait, considering that at that time, Taya was still very small, and was fairly easy to lift.
Fast forward to about 3 years ago, I decided that it was time to start looking into getting a lift installed into my van. Taya is getting big, recently gained quite a bit of weight (yay!) and, not only is it difficult for me to carry Taya to and from my van, especially in New England winter weather, going up and down an icy sidewalk and driveway, and put her in and out of her car seat, but, I also have to pick up her wheelchair and put that in and out of the back of our van. It weighs more than Taya! I reached out to the company who installs lifts into vehicles and gave them all of our information. To my surprise my entire plan was ruined when I found out that my model and make of van (Chevy Venture) is no longer being manufactured. What that means is that we can no longer get the parts needed to install a lift into our van. At first I thought it was a way that the sales rep was trying to trick me into buying a new vehicle instead of adding adaptations to mine, but after some research, unfortunately, I have confirmed that it's not possible to convert my van.
I thought I had my future all planned out, but, now I am stuck. I am having to ask my husband to take time off from work to accompany Taya and I to doctor appointments because I just can not lift the wheelchair in and out of the back of the van anymore. It's really putting a lot of restrictions on how much I can take Taya out with me without having someone come who can lift her chair and her. I want to be able to take my 3 kids out during the summer when they are out of school. I want to take Taya shopping at the mall for a mommy/daughter day. I want to be able to take her to doctor appointments without having to have my husband take a day off of work.
Taya deserves to be able to go out to all the same places that regular kids can . She is a sweet little angel. She brings so much joy to everyone around her, and I LOVE taking her out into the world to enjoy the outdoors and to see the beauty of our world. She truly enjoys things from an innocent, sweet, loving little mind. Everyday I load her into the van in the morning to drive her 2 younger brothers to school. When she arrives home from her school, I load her in the van again to go pick up her brothers from school. She absolutely LOVES taking these 2 rides everyday. She has a very deep love of music. Nothing makes her happier than when we go out to drive ANYWHERE and listen to music and Mommy sings along to her. Sometimes it can be difficult to understand what she wants, if she is enjoying a particular activity, or if something is bothering her. The one thing that is undoubtedly her favorite thing is music and mommy's singing. Her reaction is very clear. She immediately smiles, squeals with delight and excitement and claps her hands.
It's come to the point that if I want to make my life easier, less painful, and do whatever I can to give my daughter as much fun and excitement, and INCLUDE her in things that she deserves to take part in, I need to find a way to replace our van with an adapted vehicle. $10,000.00 is a steep goal, and I honestly don't expect to get anywhere near that much. Anything helps! $1.00, or just as importantly, please Share the page as much as you feel comfortable! Sharing is free!
Thank you for reading our story. Thank you for considering making a small donation! If you are unable to donate, please share our story to help get it to spread as far as possible! May you all have a healthy, happy and successful 2016 and beyond!
Elizabeth, Shaun, Taya Marie, Jameson, and Kayden xoxo
To those who have made a donation already or have shared to help spread the word, THANK YOU!!!
Hello everyone! Thank you for taking time to visit our Go Fund Me page, and for your interest in our story!I am Elizabeth. I am a 35 year old married mother of 3. I am starting a Go Fund Me for my oldest, my daughter, Taya Marie. Taya is 12 years old now. She was born with a rare chromosome abnormality called Chromosome 18 Deletion. Or "18q-" I didn't know that she would be a special needs baby, and didn't find out that she had 18q- until she was 8 months old.
Her condition's characteristics, or symptoms vary from case to case, and can be severe in some cases, and mild in others. In Taya's case, she is left without the ability to walk, stand, sit up unassisted, crawl, or to get around on her own at all. She is severely cognitively impaired and does not speak. Though she was left mostly physically and mentally disabled, we are incredibly lucky that she has not had hardly any of the huge list of medical issues that can be caused by her 18q-. We have struggled with things like her growth and weight gain, extremely poor vision and glaucoma, issues with her hips caused by her inability to stand and walk, curvature of the spine, hypertonia (uncontrollably tight muscles) and mostly those are the major problems we have encountered over the last 12 years. All in all, Taya's life has been filled with a mixture of doctors poking and prodding at her, 18q- is rare and along with myself and her family, the doctors are learning from Taya and how she progresses along the way. She's had/has braces for her feet and legs, a brace for her back, braces for her hips, braces for her wrists and hands, a "stander" a gait trainer (walking device) special lifts, special seats, wheelchairs, special needs car seats, glasses, 4 different eye drops twice daily, medications daily, a G-Tube for supplemental nutrition, and so on and so fourth. We are always trying to come up with ideas to allow Taya to experience as many fun, exciting, and somewhat "normal" things that you would want any regular child to experience. Some of our ideas have failed, some have been great successes. At this time in our lives, Taya is happy, healthy, doing great things with her ability to communicate via new electronic devices, and making great progress everyday, and wowing her teachers, therapists, family and friends!
When I had my 2nd child, a son, back in 2005. Jameson, he was born weighing a ridiculous 10 pounds 4 ounces. During his pregnancy and birth, I suffered an injury to my spine, and ever since then, I have been dealing with back problems. I was diagnosed with degenerative disc disease, and spondolylisthesis in 2007 and under went surgery. It was discovered that during Jameson's delivery, I broke a vertebra, and 11 years later, it has not healed, and will stay the way it is for the rest of my life. Degenerative disc disease has left me with 1 repaired disc, and newly herniated discs keep popping up over time. I have found ways to cope with the pain of everyday life. Injections of cortisone have helped, and I lift Taya as little as possible. I have been very lucky to have a wonderful husband who does all of the lifting when he is home. I left work after having Taya in 2003 with intentions of returning once she was about 6 months old. After learning that Taya had such severe special needs, I have had to give up working. Sometimes Taya needs to stay home from school if she comes down with something, and that can last for a week straight or even more. Her differences cause her to take much longer to battle a simple cold than most other healthy kids.
The problem we are dealing with now is transportation. There is a program that, for qualifying families who have a severely disabled child, reimburse up to $10,000 for a vehicle, up to $10,000 for making a vehicle handicap accessible, and up to $10,000 to have renovations in your home to accommodate a handicapped person. These are 1 time only. You get 1 shot at getting a vehicle, 1 shot at having a lift installed, and 1 shot at home renovations. You don't get a 2nd chance. Taya's father and I ended up buying the van that I currently transport Taya in, and were reimbursed for the amount we paid. We picked a van that we intended to add a wheelchair lift into at a later date. We would have to pay to have this done to the van and then apply for the reimbursement after, not knowing if we would even be approved. We decided to wait, considering that at that time, Taya was still very small, and was fairly easy to lift.
Fast forward to about 3 years ago, I decided that it was time to start looking into getting a lift installed into my van. Taya is getting big, recently gained quite a bit of weight (yay!) and, not only is it difficult for me to carry Taya to and from my van, especially in New England winter weather, going up and down an icy sidewalk and driveway, and put her in and out of her car seat, but, I also have to pick up her wheelchair and put that in and out of the back of our van. It weighs more than Taya! I reached out to the company who installs lifts into vehicles and gave them all of our information. To my surprise my entire plan was ruined when I found out that my model and make of van (Chevy Venture) is no longer being manufactured. What that means is that we can no longer get the parts needed to install a lift into our van. At first I thought it was a way that the sales rep was trying to trick me into buying a new vehicle instead of adding adaptations to mine, but after some research, unfortunately, I have confirmed that it's not possible to convert my van.
I thought I had my future all planned out, but, now I am stuck. I am having to ask my husband to take time off from work to accompany Taya and I to doctor appointments because I just can not lift the wheelchair in and out of the back of the van anymore. It's really putting a lot of restrictions on how much I can take Taya out with me without having someone come who can lift her chair and her. I want to be able to take my 3 kids out during the summer when they are out of school. I want to take Taya shopping at the mall for a mommy/daughter day. I want to be able to take her to doctor appointments without having to have my husband take a day off of work.
Taya deserves to be able to go out to all the same places that regular kids can . She is a sweet little angel. She brings so much joy to everyone around her, and I LOVE taking her out into the world to enjoy the outdoors and to see the beauty of our world. She truly enjoys things from an innocent, sweet, loving little mind. Everyday I load her into the van in the morning to drive her 2 younger brothers to school. When she arrives home from her school, I load her in the van again to go pick up her brothers from school. She absolutely LOVES taking these 2 rides everyday. She has a very deep love of music. Nothing makes her happier than when we go out to drive ANYWHERE and listen to music and Mommy sings along to her. Sometimes it can be difficult to understand what she wants, if she is enjoying a particular activity, or if something is bothering her. The one thing that is undoubtedly her favorite thing is music and mommy's singing. Her reaction is very clear. She immediately smiles, squeals with delight and excitement and claps her hands.
It's come to the point that if I want to make my life easier, less painful, and do whatever I can to give my daughter as much fun and excitement, and INCLUDE her in things that she deserves to take part in, I need to find a way to replace our van with an adapted vehicle. $10,000.00 is a steep goal, and I honestly don't expect to get anywhere near that much. Anything helps! $1.00, or just as importantly, please Share the page as much as you feel comfortable! Sharing is free!
Thank you for reading our story. Thank you for considering making a small donation! If you are unable to donate, please share our story to help get it to spread as far as possible! May you all have a healthy, happy and successful 2016 and beyond!
Elizabeth, Shaun, Taya Marie, Jameson, and Kayden xoxo
Organizer
Elizabeth Berry
Organizer
Salem, MA