Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Our journey with ALS began in September 2013, when our son Rajeev was just 3 months old and Roger became very fatigued and could hardly hold our baby boy. Roger got his dream job in Concord, NC in April 2014, and moved to Concord splitting our family in two places temporarily. The dream job is with a star-up company. We did not think it was stable enough for Li to quit her good career and move our whole family to NC.
In May 2014, just a month before Rajeev turned one, Roger was hospitalized for 3 weeks (2 weeks in ICU) due to respiratory failure. Since then he has been using a ventilator to assist with his breathing. In August 2015, Roger was diagnosed with ALS. Li then took a 3-month family medical leave from her job in Boston MA with Rajeev to support Roger in Davidson, NC, and quit the job in January 2016 so our family would be together in this challenging time. In May 2016, we went on a long trip to Thailand and China, seeking alternative cures for Roger, and returned to Davidson, NC in April 2017.
Despite some positive experiences in eastern treatments and incredible help received during our trip, Roger has progressed and is needing assistance with most of his daily needs, like dressing, bathing, moving, eating etc. Not until recently have we realized that we need a lot of help to tackle ALS, financially, physically, emotionally… ALS’s progressive nature requires huge expenses in accessibility equipment, home modifications, transportation and care-giving. Roger’s long term disability benefits are our family’s only source of income. With hope and faith, we are reaching out to communities for help to navigate this unknown chapter of our lives.
We would appreciate donations of time, loving presence and energy, and financial aid to babysit our 4-year old Rajeev, playdates/outings for him so he enjoys a normal life as a young child, to care for and/or accompany Roger so Li gets a break, and day-to-day tasks/errands in and outside the house. Traditionally, families have been the main source of help for ALS affected families. We pray that we have a team of wonderful volunteers to support us in a sustainable and efficient way on a regular basis; no one gets burned out; we are in this together as a community.
The following quote says it well, with a focus on chidren:
"the process of reaching out and understanding long-term loss carries incalculable benefits to everyone involved. “Illness,” she says, “is a fact of life that will impact us all at some point, either directly or indirectly. When children experience a loved one's illness and their peers witness them going through something so difficult, it can be scary. But with the support of a community, all children learn they are not alone. They also learn an important life skill about help works: it is about giving and receiving.” And, with careful leadership from adults, it is about setting secure foundations, even in the face of life’s greatest uncertainties, that can last for generations to come.”
Thank you for all your help, thoughts, prayers and any forms of support.