The most difficult part of Anne’s ALS is the pain caused by the deterioration of her muscles. Currently, Anne is unable to adjust her body or shift her weight without assistance. She is unable to move from a sitting to laying position or adjust her legs without help. With muscle deterioration the nerves in her body are pushed on and aggravated by her skin and bones. If she is in a position for longer than 10 minutes this pain and discomfort is unbearable and she requires someone to assist her in alleviating the pain through repositioning her body. This burden falls mostly on her young children and husband.
Thankfully there is a solution!!!!! There is a “Sit-to-Stand” power wheelchair that Anne can utilize.
Unfortunately, a regular wheel chair is too painful for Anne to be in for very long, within minutes she needs to be moved from the chair to a laying position. This assistance often takes 2-3 people. Due to this, Anne spends the majority of her time in one room of the house simply laying on the floor with adjustments to her limbs and body required on a regular basis. However, this power wheelchair can be adjusted by Anne at any time and take her into multiple different positions which shifts her weight and alleviates the pain and discomfort. She doesn’t need to ask for help every 10 minutes and she doesn’t need to burden her family. She has had a trial period with one of these chairs and it has made an immense difference in her level of comfort and the ability for her to have more interaction as a mother and wife to her 5 children and husband John.
As the disease progresses this need for repositioning to avoid the pain will not disappear, but become even more predominant. Her nerves will remain active and therefore pain and adjustment will remain a constant in her life.
Because this wheelchair does so much and is so complex, the cost of the chair is $45,000. After securing funding and personal loans the family is still in need and is requesting support to raise $18,000. Unfortunately the chair is not their only ongoing expense associated with Anne’s ALS struggle. The cost of a terminal illness is never ending. There are ramps, chairs, nursing care, assistant devices, renovations to the home and livelihood support that are required on an on-going basis. These are not often covered by benefits or government support. As Anne’s ability deteriorates the financial burden is put on her husband who currently works a full-time job while managing a house of 7 people.
This chair would substantially alleviate Anne’s pain both physically and emotionally. Physically, because she could adjust her body every 10 minutes to alleviate the constant pain, and emotionally, because she could start living with her family instead of just amongst her family.
- Thistlethwaite Family
- Stacey Evans
- Neal, Jacquie, Will, Bentzi and Thomas Claassen
- Karen and David Boatman
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