Let's Get Little Haley the Van & Home Modifications She Needs
Let's Get Little Haley the Van & Home Modifications She Needs
Haley Hayes is an awesome 6 year old girl that lives in rural Bracey, Virginia near the North Carolina border. She faces many challenges. When Haley was 6 months old, she was diagnosed with a rare, fatal disease, called Pompe Disease.
Pompe Disease is a genetic disease in which the body does not break down glycogen. This causes the glycogen to be stored in all the muscles of the body, with the infantile version causing glycogen storage in the heart. Because of this, Haley’s heart was so enlarged and barely functioning that her doctors were unsure of her life expectancy. They were hopeful because there was a treatment that was just approved 2 months before her diagnosis, but still unsure of the prognosis for Haley. Before this treatment, no child with Pompe Disease lived to be over 1 year old.
Over the next few years, Haley slowly got stronger, but was still very weak. She had to have numerous surgeries for things like portacaths for her treatment that were infusions and a G-tube for her to be fed since all of her muscles were involved. She attended all different types of therapies several times a week to help improve her strength, but due to the severity of her disease, she never gained enough strength to stand or walk. Because of this, Haley has many pieces of equipment that helps her to get around and also to help her gain strength and keep her bones from getting too weak.
Haley has been through so many things in her life, but has always remained positive. Things like lab draws and all day infusions are part of her life and although they aren’t pleasant, she always finds a way to stay cheerful. Haley has many hobbies such as arts and crafts and playing on the computer. She also loves to sing karaoke, dance, and enjoys being outside any day that is nice. Because of Haley’s physical limitations, some of these things are difficult.
Haley has been used to being carried the last 6 years, so now that she is reaching almost 50lbs, we have been trying to rely more on her pieces of equipment to move her around. Because of the layout of our home, it is difficult for Haley to use her wheelchairs or standers to move around in the house. This results in Haley sitting on the couch or floor a lot of the time, instead of in her equipment that would cause her to get around easier. Haley also enjoys going places, such as next door to her Grandparents house, but it is becoming increasingly difficult for Haley to be physically transported since the house does not have a ramp or easy access out of and around the house.
Haley also enjoys things like playing outside and so she won’t be confined to a wheelchair, we do our best to allow her to experience things like others children, such as playing hide and seek with other kids, riding wagons, bikes, etc. Another daily struggle is Haley’s toileting needs. Haley has to be carried to the potty on a frequent basis, causing her to be lifted up and down many times a day and also resulting in Haley losing that independence that she desperately seeks. Her family is also responsible for transporting her many pieces of equipment to school, therapies, and the hospital on a daily basis. Because they do not have a handicapped van, they have to lift heavy equipment and ramps into their van in order to transport Haley around.
HopeMob – it’s going to be time to STEP IT UP!
We need to find contractors that can make the home modifications that will drastically improve Haley’s quality of life, as well as her independence. If her house was handicapped accessible with special modifications for a special needs child, Haley would be able to live a more independent and safe lifestyle. Also, a modified van would improve Haley’s independence by allowing her to get around on her equipment safely.
We are believing that we can find these things for Haley and her family! We will raise $3,000 to assist in the purchasing of materials needed and we are seeking quality, certified contractors to help contribute free labor for this project.
If you can help provide the van or contractor services email us now @ hello@hopemob.org
Let's do this HopeMob!!!
Pompe Disease is a genetic disease in which the body does not break down glycogen. This causes the glycogen to be stored in all the muscles of the body, with the infantile version causing glycogen storage in the heart. Because of this, Haley’s heart was so enlarged and barely functioning that her doctors were unsure of her life expectancy. They were hopeful because there was a treatment that was just approved 2 months before her diagnosis, but still unsure of the prognosis for Haley. Before this treatment, no child with Pompe Disease lived to be over 1 year old.
Over the next few years, Haley slowly got stronger, but was still very weak. She had to have numerous surgeries for things like portacaths for her treatment that were infusions and a G-tube for her to be fed since all of her muscles were involved. She attended all different types of therapies several times a week to help improve her strength, but due to the severity of her disease, she never gained enough strength to stand or walk. Because of this, Haley has many pieces of equipment that helps her to get around and also to help her gain strength and keep her bones from getting too weak.
Haley has been through so many things in her life, but has always remained positive. Things like lab draws and all day infusions are part of her life and although they aren’t pleasant, she always finds a way to stay cheerful. Haley has many hobbies such as arts and crafts and playing on the computer. She also loves to sing karaoke, dance, and enjoys being outside any day that is nice. Because of Haley’s physical limitations, some of these things are difficult.
Haley has been used to being carried the last 6 years, so now that she is reaching almost 50lbs, we have been trying to rely more on her pieces of equipment to move her around. Because of the layout of our home, it is difficult for Haley to use her wheelchairs or standers to move around in the house. This results in Haley sitting on the couch or floor a lot of the time, instead of in her equipment that would cause her to get around easier. Haley also enjoys going places, such as next door to her Grandparents house, but it is becoming increasingly difficult for Haley to be physically transported since the house does not have a ramp or easy access out of and around the house.
Haley also enjoys things like playing outside and so she won’t be confined to a wheelchair, we do our best to allow her to experience things like others children, such as playing hide and seek with other kids, riding wagons, bikes, etc. Another daily struggle is Haley’s toileting needs. Haley has to be carried to the potty on a frequent basis, causing her to be lifted up and down many times a day and also resulting in Haley losing that independence that she desperately seeks. Her family is also responsible for transporting her many pieces of equipment to school, therapies, and the hospital on a daily basis. Because they do not have a handicapped van, they have to lift heavy equipment and ramps into their van in order to transport Haley around.
HopeMob – it’s going to be time to STEP IT UP!
We need to find contractors that can make the home modifications that will drastically improve Haley’s quality of life, as well as her independence. If her house was handicapped accessible with special modifications for a special needs child, Haley would be able to live a more independent and safe lifestyle. Also, a modified van would improve Haley’s independence by allowing her to get around on her equipment safely.
We are believing that we can find these things for Haley and her family! We will raise $3,000 to assist in the purchasing of materials needed and we are seeking quality, certified contractors to help contribute free labor for this project.
If you can help provide the van or contractor services email us now @ hello@hopemob.org
Let's do this HopeMob!!!
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