Overcoming Pompe one step at a time
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.
Megan Burgasser Sleater- Thank you so much for offering the chair lift. That is very generous. However my daughter uses her power chair like we use our legs. She has no control over legs, trunk, and head, and little control over her arms. She would not be able to sit in a chair on a chair lift because of these reasons. That is why we are trying to get the platform lift to get her in her power chair down to the basement. She is also ventilator dependent and requires use of her humidifier 24/7, which the back of her chair holds all of this equipment. It makes moving her in one unit the safest form of travel. Again, I am so grateful for your offer and wish we could use something as a simple as a chair lift, but it's just not feasible for Addy's condition and progression of her disease. Thank you for your support!
I have a chairlift available if you would like it. I don't believe it's the one you listed here, but it's free to a good home if you want it. It's in good condition - my grandma only used it for a few years. It mounts on the left side of the stairs as you look upstairs.
Hello all, great news. Riverside Electric Inc has come forth and donated a new generac whole home generator system with auto throw over switch, installation, extended warranty, gen pad and more. Thanks to some great people, the Gangloff family, Chris Rydel, and Derek Courts.
I forgot to mention I am in the cincinnati area.