We have enough fights, don’t make us fight you too

Dear Senator

I called your office and offered our story. You didn’t return my call so I thought I would write you this letter to introduce you to my daughter, Bridget.

 

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Bridget was born with a congenital heart defect, laryngomalacia, hypotonia, intellectual disability, Reynaud’s Phenomenon, reflux, autism and PACS1. All of these are considered pre-existing conditions. When you vote on the repeal and replacement of the Affordable Care Act, I need you to be fully informed on how your vote will effect those who without the ACA would be left to harm.

Yes, left to harm.

When Bridget was born we were told that she would never roll over, sit-up or interact with her the world around her. Our family was devastated. We met the kindest of neurologists at Boston Children’s Hospital, Dr. Micheal Robbins and Dr. April Levin. They encouraged us to never set limits on Bridget, that they believed she would defy that first physician.

The first few years of Bridget’s life she struggled to survive. After spending her first week of life in the NICU the following years were marked with multiple hospital admissions.

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Yet over time, Drs. Robbins and Levin were proven correct. Instead of going to Boston Children’s Hospital doctors every month, her visits became annual check-ins. Bridget began Early Intervention at 3 months old. This government sponsored program allowed us to have a nurse come in two times a week to care for Bridget.  Her Early Intervention nurse allowed us to keep Bridget home, rather than having to be readmitted. At 6-months old Bridget began physical therapy at Spaulding Center for Children. Physical therapy was followed by speech, feeding hydro- and occupational therapy. Bridget would spend almost 15 hours a week at Spaulding, working harder than most.

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Slowly she began making strides. First she rolled over, than she commando crawled and finally at almost 3 years old, Bridget walked for the first time.

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Unfortunately, our employer sponsored health plan did not cover all of Bridget’s therapies and medications. We enrolled into our State’s Medicaid plan as a supplement. Not free, we pay a monthly premium. The two insurances combined allow Bridget to continue to defy any limits.

Bridget went for years without a diagnosis.  In 2015 Bridget had Exome Sequencing and it was discovered that she had PACS1. At the time she was just one of 12 children in the world with the just discovered syndrome. Having a rare disease gives a parent no clear direction to follow, so we continued on with Bridget’s therapies and schooling.

Today Bridget is 8-years old. She is in the first grade at a public school, and while she has an intellectual disability she continues to defy limits. Our goal is for Bridget to be an active member of society. This is only possible with continued access to ACA.  Thanks to ACA Bridget can write her name, she can have a conversation and she makes friends.

Senator if you vote to repeal the ACA and include limits to coverage pre-existing conditions your vote will decimate my child’s chances to a full and engaging life.  Her physician visits, therapies and medications cost thousands of dollars a month. We are thankful that her two health plans cover them and are terrified of losing the benefits.

Health insurance is considered a “benefit” to health Americans, but it is an essential to our daughter. We are not celebrities, we are not affluent and we would gladly go without for our child to succeed. Yet even going without would not allow us to afford the therapies needed.

What parents of children with disabilities need is universal care and coverage. A child in North Carolina should have the same “benefits” as a child in Massachusetts. A child in Texas should have access to the same therapies and treatments as a child in Washington. Our children should have the same health coverage as your children receive.  That is the major failing of ACA. This is something you should and can fix. Every child with a pre-existing condition or disability should have access to the same therapies and coverage.

Parents of disabled children fight every day to make their children succeed.

We shouldn’t have to fight the government to not take away their healthcare.

But we will.

 

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