Recently, in the US, the presidential administration ordered to cut funding drastically for medical research. This sent a wave of panic throughout the science and medical community who have dedicated their lives to advancing and improving the lives affected by disease. While there’s no argument that everyone receiving federal funding for anything should be frugal, these cuts were made without any planning or consideration. Recklessly and with haste, the rug was pulled from under many. Luckily, 22 states sued to block this and there is a temporary halt on the order. Medicaid is also under attack—which would eliminate care that is necessary for life.
We are afraid. Angry. Devastated.
For children with rare diseases, like mine, medical advancements is the pillar of hope. On my hardest days of struggling with how I feel about my child’s diagnosis, I remind myself of the hard work being done to change the future of people living with this disease. It’s what keeps me going.
My only hope is medical research. There is no cure and treatment wanes in effectiveness over time. We have seen great progress but there are people who are still declining and will succumb to their disease without further advancements made. I follow along with the trials, I fundraise, I spread awareness and I thank my lucky stars that there are vastly intelligent people who have devoted their time to doing this research for the people affected by it. And lately it feels for naught.
I look at my child and wonder “how can I make people care about her life?” I don’t know how to make people consider her future and fight for it. I see loved ones and friends defend this action, blinded by political loyalty without thinking of the innocent lives on the other end of this act.
This feels so familiar. 5 years familiar to be exact, when I desperately needed everyone to understand and protect my newborn. Born with an enlarged heart, neuromuscular disease diagnosis in hand, during the brink of a global pandemic, and I desperately needed people to do the right thing. Instead I was mocked and ridiculed for my efforts to protect her. I was called a sheep and a bleeding heart, and I watched people around me prioritize politics over my child’s health. I was bullied for my fear. And I find myself there, again.
I have never felt so alone and isolated as I did then, and do now. I feel devastated that there are lives who desperately need this research and are being prioritized behind things that are not life and death. How can so many turn a blind eye? How can their hearts pull to business transactions and not human lives at risk? How can we claim that all lives are precious and equal, but celebrate actions that toss some to the side? Why are they so vocal about such trivial things but so quiet about this? How can I make people care about vulnerable people?
I am so angry and disheartened.
I understand that these words are uncomfortable. But I urge you to see the privilege in feeling only discomfort, and not isolation and outrage. I know that if it were your loved one, you’d feel that way too.
If you find it on your heart to try to help those affected by this, please consider signing the petitions below.
https://everylifefoundation.quorum.us/campaign/111750/
https://mdausa.webex.com/weblink/register/r49fa3a265931b2e2f3116a50c9541602
Perspectives of The Pompe World 
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