The latest attempt by Congressional Republicans to dismantle Medicaid and other medical care protections for millions of Americans is dead for now, but the fight is not over. Americans across the country, of all races, every income level, and varying levels of health are faced with a proposal to repeal Obamacare protections without replacing them with anything at all.

For many, their lives are literally on the line in this battle. My daughter Claire is one of them. Her life depends on Medicaid protections she is able to access through the Katie Beckett program initiated by Ronald Regan specially to help children like her with significant disabilities. Yet, Claire is only one child at risk. In every state, there are thousands of other children like her whose life depends on Medicaid protections and other Obamacare protections that mean that their pre-existing conditions will not disqualify them from obtaining health insurance at all.

Last week, Dr. Jennifer Arnold, star of TLC’s “The Little Couple” and an ambassador and spokesperson for the Children’s Hospital Association’s Speak Now for Kids advocacy network, traveled to Washington, D.C. with 50 patients from children’s hospitals from around the country and their families to share with lawmakers how the elimination of current health care protections would impact their lives.

MIKE OLLIVER, COURTESY OF CHILDREN’S HOSPITAL ASSOCIATION.

Dr. Arnold knows all too well what is stake. As a physician, the children for whom she cares nearly all have pre-existing conditions from birth. Moreover, because these children have complex medical needs, many rely on Medicaid protections and guarantees that their pre-existing conditions will be covered to access life-saving care regardless of their income. Without these protections, the majority of Dr. Arnold’s patients will be left without coverage and access to lifesaving care.

Dr. Arnold also a more personal stake in the current threats to health care. She herself has disabilities, is a mother to two medically complex children, and is a cancer survivor. a result, she and her family face the same dangers as her patients if health care protections are removed as she and her family may be unable to obtain health coverage due to their own pre-existing conditions.

Because the thought of a future without protections guaranteeing access to health care for children is so terrifying, Dr. Arnold thought it was important to bring her message to Capitol Hill along with just some of the millions of children who will be impacted by a repeal of current protections.

Dr. Arnold went to Capitol Hill with the children she met through the Children’s Hospital Network Association’s Speak Now for Kids Advocacy Network with a purpose. She wants legislators to understand and realize how much proposed Medicaid cuts will negatively impact children. She is focusing on children because they usually do not have a voice in these discussions, yet are likely to be more severely impacted by Medicaid cuts than adults. According to Dr. Arnold, children make up 40 percent of Medicaid recipients but only 19 percent of the dollars.

Dr. Arnold wants lawmakers to realize that “[o]ur children are our most valuable resource ― they are the future. If we don’t put kids first, our entire nation loses and our kids will not have the chance they deserve to become the most happy, healthy, and productive adults they can be.”

Meeting with children from around the country whose very lives are at stake was moving for Dr. Arnold. She met with kids like Wesley from Maine who had a heart transplant when he was just 18 months old, Jude from Colorado who has neurofibromatosis, a genetic disease that affects the central nervous system and causes tumors to grow in and on the body, and Jamela from Illinois who is fighting an atypical teratoid rhabdoid tumor, a highly aggressive, rare brain tumor.

After meeting with these children, it stood out to Dr. Arnold was learning just how many children and families with medical complexity from around our nation rely on Medicaid. By traveling to Washington, D.C. with these children and her families she was able to see the larger impact of proposed cuts to health care protections at a national level.

A future where those with disability or serious illness cannot obtain health insurance is frightening. As Dr. Arnold said, “[a]s a person with a disability and history of cancer and parent of two children with medical complexity it is my worst nightmare to imagine being denied coverage or unable to afford it due to pre-existing conditions.”

Our nation’s children deserve better. They deserve the opportunity to reach their full potential and to have access to lifesaving medical care. Basic access to life-saving treatment should be available to every child who needs it, regardless of when they became ill or disabled, what caused their need for treatment, or income level.