Supporting Cecil and Grace through Cecil's battle with ALS

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Supporting Cecil and Grace through Cecil's battle with ALS

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Earlier this summer, after experiencing a series of inexplicable physical symptoms including weakness, tremors, and weight loss, and subsequently undergoing intensive testing at Rush University Medical Center and Northwestern, our beloved friend and Brother Cecil Puvathingal was diagnosed with ALS (Amyotrophic Lateral Sclerosis) aka Lou Gehrig's disease, a progressive and terminal neurological disease.

The impacts of Cecil’s ALS advanced quickly between April and June and by early July, he required a cane and/or assistance to walk inside and a wheelchair outside. Since then, muscle atrophy has continued unabated and Cecil’s breathing has become very strained, complicated by earlier bouts of pneumonia and loss of strength in his diaphragm. Resultingly, he has depended on the use of a BIPAP machine and a non-invasive ventilator in order to sleep and regain his breath, strength and blood oxygen levels during the day. Since mid-summer, Cecil has required assistance with most daily living activities including eating, bathing, dressing and mobility. Cecil is now working with his Northwestern Multidisciplinary ALS team that is providing neurological, respiratory, PT/OT, speech therapy, and palliative care.

Amid this tragedy and associated challenges, there is an incredible blessing. After several years of effort, Cecil and Grace were able to conceive their first child early spring and baby Puvathingal is set to enter our lives in mid-to-late November. Unfortunately, while the last several months should have been filled with joyful excitement and baby planning for Grace and Cecil, but instead, Cecil’s ALS has dominated their daily lives. With Grace now in her 3rd trimester, things are becoming excessively more difficult for her, despite her superhuman will, love for, and commitment to Cecil.

Given what we know about ALS, it’s impossible to ignore that barring a miracle, Cecil’s health will continue to decline, and things will continue to become more challenging. In all likelihood, Cecil will soon require advanced care including a tracheostomy, 24/7 caregiving, and specialized medical equipment. Estimates for advanced stages of ALS care can exceed $25,000/month. Coupled with lost income and the investment Cecil and Grace recently made in their efforts to become pregnant, the financial picture is not great, and it is critical that we all come together to help Cecil and Grace navigate this ordeal.

Your contributions will help cover expensive in-home care and medical support, purchase necessary medical equipment (e.g. bed, wheelchair, communication devices, breathing support, etc.), cover costs for a tracheotomy and ongoing respiratory support, support for Grace during her maternity and care-giving leave of absence from work, general living expenses and to provide the context in which Cecil and Grace can welcome their new baby into the world and cherish whatever time they will be able to spend together as a family.
Despite the rapid advancement of his illness, Cecil has maintained his loving and positive spirit, never complaining or feeling sorry for himself, and bravely staring his situation in the face with faith and purpose. Those of us who have spent time with Cecil in recent months have had the privilege of witnessing this incredible strength of character and demonstration of faith. It has been humbling to see how he continues to “love on” other people as he’s navigating these monumental physical struggles and the dire nature of his diagnosis and what it entails. But to those of us who know and love Cecil, it was just further proof of what we already knew about him. He is a wonderful brother, son, friend, colleague and husband, and soon he’ll also be a wonderful father as well. Please join us as we rally around Cecil and Grace to help them manage this incredible challenge.

Thank you and God Bless,

Steve Cassell on behalf of Cecil, Grace, their family and friends.



Co-organizers3

Steven Cassell
Organizer
Chicago, IL
Grace Puvathingal
Co-organizer
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