I found myself in the Fall of 2002 tending a table on behalf of the Newton Green Decade Coalition at the Cold Spring Park Farmer’s market off Beacon Street. Next to me was a Hospitality Homes’ (HH) table being overseen by a long-time host who lived in Brookline. As we talked, I was intrigued and impressed by the mission of HH to provide free housing and support for patients and their families when they came to Boston-area hospitals. Their mission particularly resonated with me because I have been working in the biotechnology industry since 1989, with a patient-centric focus of getting devices and drugs through to approval, and I immediately realized that there was no reason we could not be part of this vision.
Before long, my husband Kumar and I were signed up with HH to be a host family. We live in Newton with easy access to the Newton Highlands MBTA stop, to Route 9 that takes one directly to the Longwood area of hospitals, to Route 128 that takes one to satellite hospitals in Waltham, and to Needham, which houses Boston Sight, formerly known as Boston Foundation for Sight (BFS).
We have hosted scores of families over the years and have met many wonderful people who showed remarkable fortitude, courage and grace when facing very difficult and sometimes incurable health issues. Boston is often their last resort as the mecca of expertise, having tried many options in their hometowns before coming here. It is a constant reminder to us of what one must not take for granted, whether it is overall good health, or access to good healthcare.
Among the many stories of the families or individuals we have hosted, I chose that of Carla Marisa Tome, because it highlights the importance of the remarkable mission of HH and the impact it has on people’s lives. Carla is from Portugal and she suffers from keratoconus, a condition of the eye in which the structure of the cornea is just not strong enough, and the cornea bulges outward like a cone. This can result in blurred vision, seeing streaks of light, glare and difficulty with night vision, all of which can be extremely painful and very distressing. Many with this condition are considered legally blind and cannot lead a normal life.
Keratoconus usually starts in the teenage years but can manifest in the 20s and 30s; Carla first came to us when she was in her 20s in 2005. She was suffering from many of the symptoms and was desperate to get help. After visiting several doctors in Lisbon, she was fortunate to come across the name of Dr. Rosenthal and the BFS. Carla comes from a modest family; she and her older brother lived with their retired parents. She worked a clerical job and her brother was a school bus driver. They could hardly afford the trip to Boston, the 10-day stay, and the cost of treatment. And yet, she persevered, and after multiple communications with HH and the BFS, she had arranged for a cheap flight on TAP, for her free stay with us while in Boston, as well as reduced payment for her treatment.
Dr. Rosenthal, now deceased, was the inventor of an elegant solution for keratoconus that involved the design, grinding and fitting of plexiglass hard lenses that required the patient to stay for a week or more to allow for custom adjustments and to get the patient trained on how to use them. Patients come from all over the world to get fitted with these lenses, which essentially rid them of their symptoms, enabling them to see the cracks on sidewalks, the beauty of veins in a leaf, and to lead a normal life. One young mother we hosted cried after she got fitted with these lenses because she could now see and keep up with her 3-year-old son who was always getting into trouble back home in Texas!
Carla came alone, with trepidation and with hope. She had to garner all her savings to make the trip from Porto to Boston, grateful to HH for enabling her stay, and to us as her hosts. She described Dr. Rosenthal as a God and savior who accepted discounted payment for her treatment, and importantly, helped restore her vision. I remember Carla then as a charming young woman with a lilting accent of basic, yet adequate English, who was propelled by the desire to get herself a solution before her vision was irreparably damaged. As promised by Dr. Rosenthal, and much to her delight, Carla’s new lenses worked, and she left for Porto armed with her new vision, a renewed perspective on life, and an entire suitcase filled with bottles of eye solution!
Since then, Carla has come back four additional times to stay with us through HH for adjustments to be made to her lenses. Over the years, she has become more confident and her English is much improved. Each time though, she has had to face challenges with her insurance and payments; she is ever grateful for our friendship and that at least there is one thing she does not have to pay for because HH has always been there to enable her free stay.
Carla expresses her gratitude for HH: “Besides my health situation I feel that I’m very blessed to can count with Hospitality Homes giving me (and fortunately to so many others in need) this huge support to have a place to stay whenever I have to be there for treatment. May you keep with your phenomenal mission for the future and being every time more and more supported in your cause of accommodate people from distant places, and my deepest thanks for everything you have been doing for me.”
“I have no words to express my gratitude of fourteen years (amazing!) kindly hosted by Mrs. Sara and Mr. Kumar. Since the first time back to 2005 every time I have to be there it has been full of their care, love, support, friendship and with a full space of their house just for me with ALL the amenities. I have so good memories of my stays which were always so warm and touching in order to help me facing my real purpose there which is for medical reasons in case a sight problem. I really feel like being at home and in a “family” even I am so many miles away… I have been so lucky that I always ask, if possible, to be hosted by the Kumar family when I have to go to Boston to the medical visits.”
Along the way, Carla toyed with the idea of living and working in Boston and even found her own room in Cambridge for several months as she explored this option, before deciding that she needed to be back home with her aging parents. Now, over a decade later, Carla has found a stable job and lives and works in Luxembourg. We as hosts are very thankful to HH for bringing to us the Carlas of this world with their stories of determination, resilience, and courage in the face of daunting and formidable personal hardship.
If you or someone you know might be interested in learning more about this most rewarding volunteer experience, contact Denise Duclos at 888.595.4678 ext. 2 or email dduclos@hosp.org.
Carla Marisa Tome, along with hosts Kumar and Saraswathy (Sara) Nochur at their home in Newton in 2015
About The Author
Sara Nochur
Chief Regulatory Officer, Regulatory Affairs, Alnylam Pharmaceuticals
Saraswathy (Sara) Nochur is Chief Regulatory Officer, Regulatory Affairs at Alnylam Pharmaceuticals in Cambridge, MA, where she has worked for over 12 years. She has been in the biotechnology industry since 1989, soon after she graduated with a Ph.D. in Biochemical Engineering from the Massachusetts Institute of Technology. For more than 15 years, Sara and her husband Kumar have been hosts for Hospitality Homes, hosting scores of patients and their families who come from all over the world, providing them free accommodation at their home in Newton. Sara is a Board member of Hospitality Homes and is on the advisory board for WEST, Women in the Enterprise of Science & Technology.