Unfortunately, there is no cure for ALS, which causes weakness and wasting of all voluntary muscles, including those used to move, swallow, speak, and breathe, while the mind retains its sharpness and abilities. ALS plays out very differently in from one person to another in terms of parts of the body affected initially and the rate of progression throughout the rest of the body. While the average life span of someone diagnosed with ALS is 3-5 years, there are certainly inspiring stories of outliers (e.g. Stephen Hawking) out there who live many productive years with the disease, with the assistance of advanced life-sustaining medical equipment, communication technology devices, and round the clock personal care.
Kelli Liliana’s disease has progressed fairly significantly over the past several months. The disease has spread from her hands to her arms and shoulders. Because of this, she requires assistance with nearly all daily activities. While her legs have remained relatively strong, she experiences a great deal of spasticity or stiffness in them, as well as weakness in her ankles, which makes it almost impossible to walk, and even then, only with assistance. She uses a wheelchair for virtually all mobility. Kelli Liliana’s ability to speak clearly and with enough force to be intelligible to most has also been impacted. Thankfully, however, she is still able to swallow, and breath on her own. Her appetite and ability to maintain her weight, which is very important for People with ALS (PALS), has remained steady.
There are three things that can improve the quality and length of Kelli Liliana’s life – home health care, a new drug called Radicava (the first drug approved by the FDA for the treatment of ALS in over 25 years, and only the second drug ever approved in the U.S. for ALS), and, hopefully in the near future, stem cell therapy.
Until now we have been trying to care of Kelli Liliana’s need on our own, but it has become beyond our ability to manager her care in a way that is safe for us all.
We are putting in place an “ecosystem” that will provide for Kelli Liliana’s care, ensure the well-being of her caregiving family, and the time they all have together to be of quality, and not just the struggle of surviving from one day to the next.
The pillars of this ecosystem are 1) Full-time Home Health Care for Kelli Liliana; 2) Medical Treatments and Equipment for Kelli Liliana; 3) Quality of Life Treatments for Kelli Liliana; 4) Work Routine for Kelli Liliana using Assistive Technologies; 5) Financing of Kelli Liliana’s medical and personal expenses; and 6) Financing of Home Health Care, Quality of Life Treatments, and other such expenses not covered by insurance.
It is with respect to this last pillar that we are asking for your help.
We are in the process of putting together a team of 3 professional caregivers on shifts that will provide 12 hours of care, 7 days a week. Home health care is not covered by Kelli Liliana’s current private insurance provider through the group plan at their immigration law firm. Additionally, there are out-of-pocket deductibles and co-payments/co-insurance costs for the covered medical treatments and equipment, as well as out-of-pocket costs for quality of life treatments (such as massage and stretching therapy, physical therapy, occupational therapy, and speech therapy), some of which are covered in a very limited way.
We are seeking to raise $100,000 to help cover Kelli Liliana’s out-of-pocket expenses for the next 1+ years, an amount that will provide so much quality of life to her and her caregiving family.
Thank you so much for taking the time to read through this and to consider our request for support. As clichéd as it may sound, no amount is too small, and we are humbly grateful for all support.
All the best,
Kelli Liliana, Romy, Judy and Heidi
- Steve Hiltz
- Sharon Mehlman
- Marcine Seid
- Mark Allen
Organizer and beneficiary
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