06/22/2023
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Night +19: Today was an incredibly long and arduous day. Arthur spent most of the day in a deep slumber, punctuated only by brief moments of alertness. The weight of how far we still have to journey weighs heavily on my heart, filling me with an overwhelming sense of stress. The fear that his fragile body might not reach its intended destination is an all-encompassing dread, crippling in its intensity. It takes immense strength to maintain composure and hold onto hope in the face of such challenges.
Thankfully, Arthur appears to be experiencing some relief and increased comfort, with diminished pain overall. I cling to the hope that the cells are diligently targeting the mucositis, which could explain his improving condition and reduced reliance on pain medication. My fervent prayer is that these cells will soon unleash their full restorative force. I desperately yearn for that moment when the test results reveal the positive growth of the donor cells, affirming that they are triumphantly thriving, instead of his own cells reclaiming their dominance.
Today, Maura came to visit, but Michael unfortunately missed her presence. It's peculiar how one can simultaneously experience conflicting emotions. Even as I hold onto optimism for this journey, my heart remains burdened by an overwhelming sense of apprehension and fear.
While Arthur slumbered peacefully, Ms. Lindsey graced us with her presence once again. We engaged in heartfelt conversation, and in those moments, I wished that everyone could meet the remarkable individuals who make up Team Arthur here in Pittsburgh. Witnessing the profound fulfillment they derive from these challenging journeys of the children on this floor is truly magical. Michael and I often discuss how the nurses make it impossible to choose a favorite. It's like opening a mystery toy, knowing that every outcome is a positive one. I have genuinely cherished every doctor and nurse who has been entrusted with Arthur's care on 9B. Whenever we encounter a familiar face among the nursing staff, I secretly celebrate. And yet, when we meet new nurses, I doubt they could ever live up to the exceptional care provided by Rachel, Emma, Emily, Jami, Mia, and the countless others. But time and time again, we are pleasantly surprised by the sheer excellence of individuals like Carly, Gabriella, Mattie, both Jill's, Ashley, and so many more. It becomes a challenge to single out just one, for they all possess an undeniable greatness.
Today, not much has changed in Arthur's condition, except for the renewed goal of helping him rest and find solace from his ailments. The NDRD team paid us a visit, and in my heart, I firmly believe that if this transplant proves successful, we will witness the emergence of a perfect version of Arthur. It may differ from the image we had envisioned when he was first cradled against my chest nearly two years ago. If someone had foretold that this would be our path, I would have dismissed them as crazy. I could have accepted the presence of cancer, autism, or even heart disease, but the cruel intrusion of this cruel genetic illness upon our precious son was inconceivable. Yet, through divine providence, God's plan has unfolded flawlessly. Looking back, I now understand that when we carried our twins in 2014, one or both likely carried Krabbe, but God knew that Skylar and Arthur were meant to grace this world. And now, it is our duty to harness Arthur's journey as a catalyst for change, to stand up and fight tirelessly for newborn screening.
The battles fought in the political arena have dealt a devastating blow to our cause. Two colossal arguments were wielded by politicians to deny Krabbe newborn screening on a federal level: firstly, the perceived high risk of infection during a transplant, and secondly, the skepticism surrounding the feasibility of early detection before the disease irreversibly takes hold. To these arguments, I find myself questioning with every fiber of my being: is the risk of infection not worth taking if it means granting a precious child a chance at life? For what awaits them in the clutches of Krabbe is an agonizing and merciless death. And how can we hope to catch this insidious disease before it has ravaged their tiny bodies? The answer, as you may have guessed, lies within newborn testing.
We cannot stand idly by and let the decisions of elected individuals dictate whether a parent has knowledge of their child's terminal illness or not. For them to decide if a parent should have the time to make an educated decision or not. It is an unjust power that should never reside in the hands of those who have not endured the anguish of watching their own flesh and blood suffer. Denying parents the opportunity to fight for the lives of their children is a grave injustice that cannot be tolerated. I implore you, let us unite and exert relentless pressure upon those in power, demanding a change in policy. Arthur's story must be shared far and wide, and each signature on the petition is a resounding call for transformation.
Together, let us transcend our own struggles and strive to make a difference that extends far beyond our own lives. Let us advocate for the future of our nation, and with hope in our hearts, perhaps even the world. We yearn for a world that embraces the rights of our children, their inherent right to exist and thrive. Disabilities may accompany their lives, but we firmly believe that God intricately crafted and designed each one of them for a purpose. Their presence in this world is not a coincidence; it is a testament to their profound significance.
So, I challenge you, join us in this relentless fight. Spread Arthur's story like wildfire, for it carries the power to ignite change. Stand with us, sign the petition, and let our collective voice resound through the corridors of power. Let us forge a world where every child is given a fighting chance, where the right to live is fiercely protected. Remember, their lives are not mere accidents or inconveniences. They are miracles waiting to be unveiled, bearing the imprint of divine craftsmanship.
https://actionnetwork.org/letters/expanded-newborn-screening
