Update on Nolan and Diana Kelsch's Family
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Update on Nolan and Diana Kelsch's family...05/24/2021
Hey everyone!! Thank you for your continuing support in helping Nolan and Diana make their home more functional for the girls. They have had a couple of contractors come look at the house. They are so excited about the upcoming improvements for the home to make life so much simpler for them and their girls.
I wanted to provide you with an update that their basement flooded the weekend before we launched this fundraiser. There was a lot of damage so they are working on getting the basement repaired so that they can move downstairs while the upstairs area is remodeled. Fortunately, their home insurance will cover the repairs needed from the flood damage.
Nolan and Diana still need a wheelchair-accessible van and a concrete pathway, etc. in the backyard. If anyone can lend experience or resources please let us know. Thank you again for your support and prayers. Please keep sharing!!
Update on Nolan and Diana Kelsch's family...
This amazing couple's world was turned upside down when their oldest daughter Nexus was diagnosed with Friedreich's Ataxia(FA) https://en.wikipedia.org/wiki/Friedreich%27s_ataxia at 12 years old. What they thought might be a simple scoliosis case turned out to be a $5,000 test and an agonizing 3-month wait. After hearing this devastating news, everyone came together and sent this wonderful family to Hawaii to stay for a week in 2018. It was such a wonderful experience for all of them and they are so grateful for the incredible generosity. Nexus's dream came true. She is now 14.
Friedreich's Ataxia is a rare genetically inherited disorder(in short, a fatal neurological disorder). It manifests in the form of difficulty walking, a loss of sensation in the arms/legs, and impaired speech. To put it bluntly, the muscle groups will continue to shut down until even the throat muscles will be useless. At that point, nutrients will have to be administered through a feeding tube. The thinking and reasoning of someone suffering from FA are not affected. They are completely aware of the decline of their body and the fact that their bodies used to be fully functional. This disease causes damage to parts of the brain and spinal cord which makes it so the brain communicates incorrectly with the rest of the body. For example: When someone with FA falls, their brain instructs them to catch themselves; however, their hands/arms do not respond to the instructions the brain is sending which makes for a very painful and dangerous fall. Friedreich's Ataxia also causes damage to the heart and other neurological functions. Physical exhaustion happens much more quickly for someone with this disease.
In 2020, Nolan and Diana received the test results that Nexus' little sister Novella, also was confirmed to have Friedreich's Ataxia at 8 years old. The heartache they felt was beyond words. Novella is now 9. Nolan and Diana do not know how long their girls have to live as it varies with each FA case.
Nolan and Diana need to be able to accommodate their girls throughout each stage of this disease. Their home needs to be updated to be wheelchair accessible so the girls can have the safety and space they require to get around. Nexus is almost completely wheelchair-bound and Novella is using a rollator (walker with 4 wheels) and will be needing a wheelchair as the disease progresses. Nolan and Diana were telling me that before Nexus was able to maneuver her wheelchair into the bathroom, she would park it outside the door and get herself into the bathroom. There was an incident where Nexus grabbed onto the towel rack for stability and pulled it out of the wall, falling to the ground. She was sore for 3 days after the fall. They were telling me that a fall like that destroys Nexus's confidence in her ability to do things for herself. This upsets Nexus considerably because she is realizing her body can't do what it used to be able to do. There are now sturdy bars in place so this won't happen again. This is the kind of thing that these parents deal with and face on a day-to-day basis.
Nexus and Novella need the following accommodations:
Wheelchair accessible van for two wheelchairs
Doorways widened in their home to allow for wheelchairs
Bathrooms modified/remodeled to meet their needs
Flooring changed to accommodate wheelchair use
A lift system that allows the girls to get off the porch and to the back yard
Concrete added to the backyard to allow for wheelchair use
Ongoing Hospital Bills
Our goal is to raise at least 100K to help them accommodate the girls' needs. For those with remodeling and/or concrete skills, any volunteered help with design, labor, and/or materials would be greatly appreciated.
Nolan and Diana are facing the reality that one of them will eventually have to quit their job because their girls will need full-time care. Due to all the girls' medical costs/needs, they both currently need to continue to work for as long as possible. This family sincerely appreciates the continued prayers and any help you can give. Please contact Bonnie Young with any questions about donations and/or volunteer services.
Loading the girls and their gear
Unloading the girls and gear
Backyard Plans
Simple tasks not so simple
Nexus from Bathroom to Wheelchair
(They would love to make the bathroom wheelchair accessible by combining the master bathroom and the main bathroom)
Nexus
Novella
This is an x-ray of Nexus' spine from 10 months ago. Severe scoliosis is another symptom in only some cases. Surgery is inevitable and will completely disable her. Most people with normal healing factors will recover in about 3 weeks. This disease will make it much harder for her to recover as she will not be able to move around unassisted.
Hey everyone!! Thank you for your continuing support in helping Nolan and Diana make their home more functional for the girls. They have had a couple of contractors come look at the house. They are so excited about the upcoming improvements for the home to make life so much simpler for them and their girls.
I wanted to provide you with an update that their basement flooded the weekend before we launched this fundraiser. There was a lot of damage so they are working on getting the basement repaired so that they can move downstairs while the upstairs area is remodeled. Fortunately, their home insurance will cover the repairs needed from the flood damage.
Nolan and Diana still need a wheelchair-accessible van and a concrete pathway, etc. in the backyard. If anyone can lend experience or resources please let us know. Thank you again for your support and prayers. Please keep sharing!!
Update on Nolan and Diana Kelsch's family...
This amazing couple's world was turned upside down when their oldest daughter Nexus was diagnosed with Friedreich's Ataxia(FA) https://en.wikipedia.org/wiki/Friedreich%27s_ataxia at 12 years old. What they thought might be a simple scoliosis case turned out to be a $5,000 test and an agonizing 3-month wait. After hearing this devastating news, everyone came together and sent this wonderful family to Hawaii to stay for a week in 2018. It was such a wonderful experience for all of them and they are so grateful for the incredible generosity. Nexus's dream came true. She is now 14.
Friedreich's Ataxia is a rare genetically inherited disorder(in short, a fatal neurological disorder). It manifests in the form of difficulty walking, a loss of sensation in the arms/legs, and impaired speech. To put it bluntly, the muscle groups will continue to shut down until even the throat muscles will be useless. At that point, nutrients will have to be administered through a feeding tube. The thinking and reasoning of someone suffering from FA are not affected. They are completely aware of the decline of their body and the fact that their bodies used to be fully functional. This disease causes damage to parts of the brain and spinal cord which makes it so the brain communicates incorrectly with the rest of the body. For example: When someone with FA falls, their brain instructs them to catch themselves; however, their hands/arms do not respond to the instructions the brain is sending which makes for a very painful and dangerous fall. Friedreich's Ataxia also causes damage to the heart and other neurological functions. Physical exhaustion happens much more quickly for someone with this disease.
In 2020, Nolan and Diana received the test results that Nexus' little sister Novella, also was confirmed to have Friedreich's Ataxia at 8 years old. The heartache they felt was beyond words. Novella is now 9. Nolan and Diana do not know how long their girls have to live as it varies with each FA case.
Nolan and Diana need to be able to accommodate their girls throughout each stage of this disease. Their home needs to be updated to be wheelchair accessible so the girls can have the safety and space they require to get around. Nexus is almost completely wheelchair-bound and Novella is using a rollator (walker with 4 wheels) and will be needing a wheelchair as the disease progresses. Nolan and Diana were telling me that before Nexus was able to maneuver her wheelchair into the bathroom, she would park it outside the door and get herself into the bathroom. There was an incident where Nexus grabbed onto the towel rack for stability and pulled it out of the wall, falling to the ground. She was sore for 3 days after the fall. They were telling me that a fall like that destroys Nexus's confidence in her ability to do things for herself. This upsets Nexus considerably because she is realizing her body can't do what it used to be able to do. There are now sturdy bars in place so this won't happen again. This is the kind of thing that these parents deal with and face on a day-to-day basis.
Nexus and Novella need the following accommodations:
Wheelchair accessible van for two wheelchairs
Doorways widened in their home to allow for wheelchairs
Bathrooms modified/remodeled to meet their needs
Flooring changed to accommodate wheelchair use
A lift system that allows the girls to get off the porch and to the back yard
Concrete added to the backyard to allow for wheelchair use
Ongoing Hospital Bills
Our goal is to raise at least 100K to help them accommodate the girls' needs. For those with remodeling and/or concrete skills, any volunteered help with design, labor, and/or materials would be greatly appreciated.
Nolan and Diana are facing the reality that one of them will eventually have to quit their job because their girls will need full-time care. Due to all the girls' medical costs/needs, they both currently need to continue to work for as long as possible. This family sincerely appreciates the continued prayers and any help you can give. Please contact Bonnie Young with any questions about donations and/or volunteer services.
Loading the girls and their gear
Unloading the girls and gear
Backyard Plans
Simple tasks not so simple
Nexus from Bathroom to Wheelchair
(They would love to make the bathroom wheelchair accessible by combining the master bathroom and the main bathroom)
Nexus
Novella
This is an x-ray of Nexus' spine from 10 months ago. Severe scoliosis is another symptom in only some cases. Surgery is inevitable and will completely disable her. Most people with normal healing factors will recover in about 3 weeks. This disease will make it much harder for her to recover as she will not be able to move around unassisted.
Organizer and beneficiary
Bruce Young
Organizer
Herriman, UT
Nolan Kelsch
Beneficiary