Amilyn Rose Thomas from Philadelphia was in the eighth-grade when she wrote a poem about her brother, Immanuel, who suffers from a rare genetic mutation called Cardiofaciocutaneous syndrome which affects multiple organs, leading to seizure disorders as well as stomach and breathing issues.
She grew up learning to care for her brother, playing and reading books with him, being there when his home care nurses or parents could not be present, and, once she was in middle school, helping him with his respiratory treatments, feeding him through a g-tube, and familiarising herself with his medications so she could administer them herself.
“I was trained under experienced home care nurses by actively participating in the patient care and emergency rescues of my special needs brother,” she tells THE WEEK.
When Immanuel suffered from seizures, Amilyn would spring into action—helping her parents and the nurses get oxygen or seizure rescue medications, or calling 911 and guiding the emergency medical technicians to the house. “Sometimes the best therapy he gets is just being near to him,” she adds.
“I completed training in CPR with and without ambu bag, usage of pulse oximeter and meaning of alarms, use of oxygen from different types of tanks with nasal cannula and face mask while in my middle school. While in high school I assisted my parents with the daily respiratory treatments using nebulizer, cough assist, theravest, suction. I was trained by my parents to connect bipap, tracheostomy care and tracheostomy change, replacing trach strings, home ventilator setup,” she continues.
In September, Amilyn, 17, was the only child speaker at the opening of the United Nation’s General Assembly’s 2021 edition of the Day of General Discussion (DGD), organised by the United Nations Committee on the Rights of the Child (CRC).
The poem she wrote many years ago had opened the door to her remarkable exposure to multilateral decision-making and the world’s foremost platform on children’s issues. After it was read by Dr Pavan Antony—a professor at the School of Education at Adelphi University in New York who teaches special education teachers—he nominated her to the CRC Children’s Advisory Team (CAT).
As she welcomed the committee to discuss the experiences of children in alternative care across the world, her eloquent and passionate speech drew the attention of US senators and Indian MPs alike, as she reflected briefly on her experience caring for her brother, now nine years old.
Amilyn is the daughter of Jose Thomas and Merline Augustine, both from Pala in Kerala’s Kottayam district, who migrated to the US in 2000. As Amilyn told Manorama Online, they visit Kerala every two years. She chose to wear Indian attire for her September 16 address, hoping to show Indian culture and its value to the UN audience.
A combination of her speaking skills and the Kerala connect helped her address gain traction. Thiruvananthapuram MP Shashi Tharoor was among those who hailed Amilyn’s speech, which was well shared among the Kerala diaspora.
The Day of General Discussion organised by the @UN Committee on the Rights of the Child had a Kerala connection. Among the
— Shashi Tharoor (@ShashiTharoor) September 18, 2021
Opening Speakers (the only one who’s a child herself), speaking on the needs of “special children”: 17-year-old Amilyn Rose Thomas.https://t.co/SZP6vmMhec
Amilyn was also formally honoured by New York State Senator Kevin Thomas (who is also of Malayali descent), while Sen. Pat Toomey of Pennsylvania wrote to Amilyn, personally commending her for her “deep and meaningful concern” and for taking action to benefit the lives of those “who require the assistance of others to care for themselves”
Amilyn had been selected to represent the United States as one of 30 members from 250 applicants around the world representing 19 countries. For almost two years, she worked with the committee as a member of the CAT, where her duties included comparing care options for children in different countries across the world, surveying youth and children to make sure their voices were heard, providing guidance to the UN CRC and preparing the agenda for the Day of General Discussion that was held in September.
As part of CAT’s work, 1,188 children and young people aged between 5 and 25 from across the world who had experience of alternative care or child protection systems were consulted.
“I got first-hand information regarding issues faced by children around the globe [on] the emotional stress of children separated from parents in many countries due to war or political unrest, [as well as] issues faced by children in foster care, facilities and group homes,” she says.
“As part of my recommendations [as part of the CAT team providing feedback and consultations with the CRC], I campaigned for change in the stigma around children with special needs. All around the world, people think that they can’t do anything about these children but these children have many desires and talents as well. People should change the fatalist attitude and be more compassionate towards children with alternate abilities. Every government should make it a priority to provide free healthcare benefits to all children with life-long medical needs,” she says.
You can read the CRC’s recommendations here.
Amilyn says she plans to become a paediatric doctor and help children who are in need of medical care. This summer, she interned at a local hospital in Philadelphia, where she shadowed clinical rounds and gained awareness of both the processes involved in caring for the critically ill as well as the role of research teams in facilitating clinical trials. This solidified her desire to pursue medicine, she says.
But, she also wants to advocate for timely approvals from insurance providers for those with various care needs. And her inspiration, keeping her empowered, is the most powerful woman in the world—Vice President Kamala Harris, who like her is also of Indian-origin.
“My greatest inspiration is Kamala Harris, our Vice President. My interest for her grew during the last Presidential election when I realized that she had a really strong chance of being one of the first female leaders of America. The fact that she is also an Indian-American just empowered me. I would love to meet her one day and discuss the opportunities for improvement for children in alternative care,” she says.
“I would like to pursue public service opportunities by being a strong advocate for child rights and being the voice of voiceless,” she says.
Amilyn also has tentative plans to help raise funds for organisations working with children with different abilities in Kerala.
“We are still in discussions with Kerala-based non-profit organisations that work with children with different abilities. The plan is to give exposure to these organisations in the United States and organize fundraising events to support them financially,” she says.
