Overcoming Pompe one step at a time
Donation protected
For those of you who haven’t yet or are unable to watch the video, my neice Addylen Sue Reeder was born on October 26th, 2009. 6 months later she was diagnosed with a rare muscular dystrophy called Pompe disease.
What is Pompe?
Pompe is an inherited disorder caused by the buildup of a complex sugar called glycogen in the body’s cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally. For more information about Pompe, there is no better place to visit than that of Megan Crowley’s personal website: https://highheeledwheels.com/ as Megan too has dealt with Pompe all of her life.
Why do we need your help?
The reason for creating this GoFundMe campaign is so that we can raise the funds necessary to help the Reeder family handle some of the new struggles being presented to them, namely those associated with Addy getting bigger.
The following are a list of those very important pieces of equipment & machinery that the Reeder family desperately needs:
1. Butler Mobility Inclined Platform Lift – $24,250 + $1,500 for any additional construction materials and labor + tax
2. Generac Guardian 22,000-Watt Standby Generator – $4,697 + tax
3. Hoyer Voyager Portable Easytrack 3 Post System – $2,565 + $1,000 for any additional construction materials and labor + tax
Total Estimated Cost: $36,500
The Butler Mobility Inclined Platform Lift will be used to safely transfer Addy to and from the basement of her home. This will be so important in not only giving my niece more freedom, but in also giving our family peace of mind during storms.
The Generator will be used to supply backup power to all of her equipment in the event of a power outage. Years ago, I personally witnessed the terror that unraveled after a power surge tripped the breaker which resulted in power loss to Addylen's only air supply, her vent.
And finally, the Hoyer Easytrack System will be used to transfer Addylen from her chair to the bathtub and back. This is yet another crucial scenario that currently involves Addylen's parents to manually move her from her chair to the tub and back. And yet this is another area where the family unquestionably needs this assistance.
If you have any questions about Addylen, the Reeders, this campaign, Pompe disease and/or anything at all please do not hesitate to ask. We cannot thank you enough for visiting Addy’s GoFundMe page and we greatly appreciate your contributions to help this much deserving family. Thank you and God bless.
What is Pompe?
Pompe is an inherited disorder caused by the buildup of a complex sugar called glycogen in the body’s cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally. For more information about Pompe, there is no better place to visit than that of Megan Crowley’s personal website: https://highheeledwheels.com/ as Megan too has dealt with Pompe all of her life.
Why do we need your help?
The reason for creating this GoFundMe campaign is so that we can raise the funds necessary to help the Reeder family handle some of the new struggles being presented to them, namely those associated with Addy getting bigger.
The following are a list of those very important pieces of equipment & machinery that the Reeder family desperately needs:
1. Butler Mobility Inclined Platform Lift – $24,250 + $1,500 for any additional construction materials and labor + tax
2. Generac Guardian 22,000-Watt Standby Generator – $4,697 + tax
3. Hoyer Voyager Portable Easytrack 3 Post System – $2,565 + $1,000 for any additional construction materials and labor + tax
Total Estimated Cost: $36,500
The Butler Mobility Inclined Platform Lift will be used to safely transfer Addy to and from the basement of her home. This will be so important in not only giving my niece more freedom, but in also giving our family peace of mind during storms.
The Generator will be used to supply backup power to all of her equipment in the event of a power outage. Years ago, I personally witnessed the terror that unraveled after a power surge tripped the breaker which resulted in power loss to Addylen's only air supply, her vent.
And finally, the Hoyer Easytrack System will be used to transfer Addylen from her chair to the bathtub and back. This is yet another crucial scenario that currently involves Addylen's parents to manually move her from her chair to the tub and back. And yet this is another area where the family unquestionably needs this assistance.
If you have any questions about Addylen, the Reeders, this campaign, Pompe disease and/or anything at all please do not hesitate to ask. We cannot thank you enough for visiting Addy’s GoFundMe page and we greatly appreciate your contributions to help this much deserving family. Thank you and God bless.
Organizer and beneficiary
Tyler Banschbach
Organizer
Hebron, KY
Kendra Reeder
Beneficiary
