￼We are seeking your generosity in assisting Mark so that can meet his ongoing custodial costs for daily home health care due to his degenerative neuromuscular disease.
The neuromuscular disease, a form of spinal muscular atrophy, that has inhabited his body since Mark was 18 had been progressing slowly — almost negligibly. However, over the last 5 years, the disease has taken a dramatic turn and, regretfully, is degenerating more rapidly.
Whereas Mark previously had been able to manage his physical life with little or no difficulty, he remains dependent on in-home health care professionals to assist him in the following daily activities, designated as “custodial” services:
• mid-morning: transferring him from his power chair onto the toilet commode and cleaning him, bathing, dressing, and then transferring him into his power chair, where he remains for the entire day; help being fed
• mid-day: help being fed, and taken outside for fresh air
• late evening: help being fed, transferring from his power chair onto the toilet commode and cleaning him, then into his bed where he is undressedl, changed, and finally assisted to be placed under his bed covers
The in-home health care attendant that Mark currently employs and needs for these accommodations must be physically very strong, and must care for Mark in a dependable and capable manner.
The Request: The projected costs of these custodial services over the next 12+ months demand far greater financial outlay than what Mark and family members are currently capable of providing in full. Hence, we are seeking outside and additional financial support in order to maximize his independence and maintain the quality of his life.
These custodial services that Mark depends on currently come from a very loyal and capable private caregiver. Unfortunately, Mark’s health insurance policies do not cover these services because his needs are considered “custodial” and not “medical” or “nursing” services — which would be covered by his insurance.
Consequently, Mark is required to pay for these per-visit expenses 100% out-of-pocket every day.
Although the Muscular Dystrophy Association (with whom Mark is registered) covers some service and equipment expenses, they never have and currently do not cover or make any provisions for custodial services.
On a side note: California’s Medicaid program was and still is in the process of cutting even more health services. For those reasons and others, California’s Medicaid program became an impracticable option.
Mark can and does meet his daily living expenses (rent, food, phone, etc.). And, so, if he can solicit financial support for his custodial needs he will, at least, be in a better position to resume a meaningful and purposeful life. Most significantly, he feels he can at long last take his public speaking/radio talk-show project (“The Hugo Project”) and finally make it public. In so doing, he is hoping once again to earn and enjoy the autonomy and independence of generating his own income. That is his plan.
So, as daunting as this request may be for all of us to make, we feel simultaneously awkward and comfortable in coming to you to ask for your financial assistance. Your contributions will help us to pay for the custodial services that Mark so urgently needs.
In calculating the aforementioned custodial expenses, Mark estimates that by raising $34,315, he will be able to sustain the current level of care which, in turn, will free him to realize his passion and his dream ... “The Hugo Project”.
At this time of multi-layered challenges that Mark is forced to meet, and in the spirit of those able and willing to lend a hand, we are asking you to please contribute in a way that actually makes a difference in Mark’s ability to maximize his independence and add to the quality of his life.
You can donate securely online here using a credit card (which will include GoFundMe processing/admin fees to be deducted) via this website where shown.
Please note: Since this fundraiser is not a 501(c)(3) organization, donations are not considered tax deductible.
Should you have any questions or comments or should you seek to verify any claims made in this Request Letter, please feel free to contact. Thank you wholeheartedly for your consideration. ￼
- ocsombre christelle
- Rick Klein
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