Project Sloopy is a 501-3c Non-Profit organization based in Philadelphia, PA, and run solely on the passions of its founders, Tom and Kate Mallery. Project Sloopy is a uniquely personalized organization founded on the principals of love, compassion, and admiration; it is a preeminent value of this organization to above all honor its devotion to humanity and preserve the legacy of which their daughter, Ana Cru (Sloopy). Project Sloopy warehouses all supplies and equipment within the city of Philadelphia; but they accept equipment donations from any location in or outside of the country.
The salvaging and redistribution of supplies is a coordinated effort through solid relations with social workers and teams of medical professionals all over the country, as well as personal relationships cultivated through daily communication with families.
It was through social media that the couple were able to visit the homes of many families during their inaugural cross-country road trip in the summer of 2013, where they drove over 13,000 miles, and were able to salvage an entire van and 6×12 trailer full of medical supplies. They are continually motivated by the interactions with families and their inspirational children. Project Sloopy has always felt passionately about the need to connect with families on a very personal and intimate level: to not only bring them relief from the deluge of excess medical supplies, but to bring them a sense of understanding, of compassion, to reassure them that Project Sloopy is familiar with their struggles and their frustrations, and are set on mitigating all that they can.
Project Sloopy’s logistical goal is to transport the medical supplies of one families burden to the hands of another families distress. In addition, Project Sloopy works closely with families to:
- affirm that they are maximizing the potentiality of their health insurance coverage (whether, state, federal, or private)
- ensuring that all possibilities for medical coverage have been exhausted to the fullest extent
About Ana Cru
Ana received her alias of “Sloopy” from her father on her second – and very fitful – day of life, when on the way to be at her bedside in the NICU the song “Hang on Sloopy” had come on the radio and nearly totaled his emotional fragility. The ensuing hours were dedicated to arching over her still body and whispering the words of the song through tears and agonizing helplessness. Ana had been born without the faculties to breath her first breath of life or swipe and kick at the mysteriousness of her novel surroundings. Immediately following the couples emergency C-section Ana was intubated (with a breathing tube) and briskly transported to another hospital with the resources to facilitate her complex care. The couple was to be separated in the post-delivery care room and it was there that daunting curiosity had reigned over their spirits now in turmoil before a dark future. For the first time since her delivery Kate was able to see her daughter from the protection of a partially encapsulated isolate that was wheeled to her bedside. She smiled and reached for her daughters hand and caressed it. As the isolate was wheeled towards the elevators the tearful couple embraced and told each other to be strong. Kate was able to watch through the transparent wall while her husband trailing closely behind her baby from the joyful comforts of her arms.
The next three months would be spent in the NICU awaiting test results to reveal some semblance of conclusiveness her prognosis. Ana underwent every test imaginable, from genetic micro array, to MRI’s, brain MRI’s, EEG’s, CT scans, CAT scans, and testing for any kind of syndrome that her abnormal physical symptoms might suggest. Once seen by the Orthopedic team it was learned that her left femur had been fractured at birth, both her wrists were hyper-extended and bruised; she also suffered from severe hip displacia and was diagnosed with bi-lateral clubbed feet. During the first couple months of her life her hands had remained in a clenched position as if the force of life lived in her palms and she would cease from relinquishing her grip. Her body was acutely hypotonic (minimal physical mobility, and low muscle tone) which bespoke of her inability to feed correctly by latching onto the breast, as well as her inability to perform the simplest of activities such as holding herself upright, rolling over onto her side, or even turning her head to track an object before her eyes. Although the symptoms were indications of manifold syndromes and developmental impediments, they fell short of framing a single picture that would justify their existence. While questions were left unanswered, Ana triumphed to, at moments of ecstasy, surmount her internal captor and move from intubation to Bi-pap, then to C-pap, and eventually to a high-flow nasal cannula which would lead her to the freedom of finally breathing oxygen on her own volition. It was a victory with the inspirational magnitude of peace on earth. When one hears nothing but the sirens of siege upon the spirit, one longs for that glorious day when hope prevails over the cynicism of expectations. Doctors had deferred to her development at the behest of her weakness and failure to exhibit the watched-for signs that would elicit a sanctioning of proactive care. A “weak suck” was apparently suitable evidence for the discontinuation of Ana’s oral therapies; yet when her Father proposed that they at least try before subjecting her to the discrimination’s of her condition, Ana slowly developed the ability to suck on a pacifier, and did so, often when in the company of her parents as well as medical teams. However ephemeral this achievement might have been, it accented the indiscriminate will occluded behind her suffering.
Shortly after a family meeting with Ana’s medical staff and family it was decided upon to perform a g-tube surgery that would secure her reception of nutrition through a tube surgically implanted in her stomach. This would be the manner in which Ana would eat and receive nutrition for the remainder of her life. It was suggested by the medical and social work staff for the NICU that Ana be transferred to the specialized hospital – which is a separate wing within the same hospital – so that she could be cared for in a low-intensity environment where her parents could learn at a reasonable rate to take care of her before feeling comfortable enough to bring her home. It was here that Ana’s fatal habit of aspirating was learned when she was brought in for physical therapy during one of her feeds. This incident dramatically set back the advancement of her care, as well as spiral the date of her discharge into the abyss of days, weeks, and months. When it finally came time to bring her home Ana was only home for a month before she became seriously ill and her parents were forced back into the hospital way of life. Ana was treated in the PICU this time, and after examination discovered that she had been slowly trapping CO2 in her lungs, which if not attended to would have slowly killed her. The subsequent months spent in the PICU were challenging on every level of human endurance. Her condition had worsened to the point that it was agreed upon to have Ana baptized right where she lay in her absurdly large hospital bed. Ana’s respiratory condition was in a steady decline until a single night collapsed entirely on their hopes as Ana had to be reintubated once again; and it seemed as though they had all been thrown back to the first days of their collective nightmare.
A request was made to the attending doctor for a second opinion from the Children’s Hospital of Philadelphia. Ana’s family wanted answers – whether ominous or fruitful – they wanted to visualize the face of their dictator. A team arrived in dark red flight suits with golden wings adorning their left breasts. They were methodical, tender, strategic, and sympathetic to the parents fearful urgency. Before long they were airborne and Ana’s family followed in pursuit of an ending to their daughter’s suffering. Ana was again seen and analyzed by a myriad of specific medical teams who scoured the landscape of her body for any didactic symptoms. Conjectures as to the nature of her condition were again proposed to no tenable theory. It was only until the head neurologist conducted an updated MRI of her brain and soon juxtaposed it with an earlier MRI that it was evinced the significant and global damage done to her brain. It was speculated that the damage could have been initiated during the final weeks of pregnancy wherein an obstruction of blood flow to her brain had been caused either through the placenta or other inscrutable means. Ana’s parents were each shown the devastating proof at different times with each succumbing to identical fits of rankled anger and despair. The neurologist had reaffirmed the couples refusal to submit their convictions and allow Ana to be trached; from his perspective, a trache would have done nothing for her quality of life and only preserved a body of pure malfunction. A solemn recommendation was made by the palliate care team that Ana be taken home on hospice. Her parents only wanted to experience, if only provisionally, the joys of regularity which would arise in the consolations of home. They only wanted a semblance of normalcy for their family.
The couple brought their daughter, Ana Cru, home on hospice at 9 months old. It was their decision to forego at home nursing for the sake of experiencing for the first time since their daughters birth the feelings and vocation of being parents. Ana was home, but not without the support of hospital grade equipment which included an air concentrator to supply her respiratory needs, a kangaroo joey pump to propel the liquid food through her g-tube, and a sundry of gauze, lubricants, chux, tubing, suction equipment, and of course the normal baby supplies like diapers, toys, and closets full of clothes. Ana did as well as she could in the last months of fall, thriving to a point that would inspire a discussion between the pact team and the VNA to graduate her off of hospice. However, it was not before long that the blustery winter days arrived that Ana’s health would begin to transition into a tailspin of regressive motility issues that instigated, in her parents, the return of fear in light of her approaching extradition from suffering. Ana’s body began to refuse feeds of every degree; continuous, bolus, syringe, gravity feeds: nothing would suffice to deliver nutrition. Her parents never gave up hope, and even when told that this was a harbinger of her decline, they continued to try and feed her even if it was only 1ml a day; they would not give up on her until the last breath had escaped. On the last day of life Ana was held in her Father’s arms while her mother draped over their legs quivering the words of her favorite song, “you are my sunshine” as she passed away from her unrequited body.
Ana Cru (Sloopy) brought such a precedence of love, acceptance, passion, compassion, strength, perspective, unity, harmony, and altruism to the hearts of all whom her image or life had engaged through photographs or in the depths of her gaze. Her parents were forever, and profoundly altered by their time with her, and in the advent of her death, set themselves aligned with a mission to conserve the expressive beauty of her fight within the ramparts of a mission to allege solidarity among the community of selfless supporters that aided them through the emotional devastation and confounded terror associated with living at the mercy of a diagnosis. Their daughter’s suffering on earth transcended the finite space of one body to annex the suffering of all children, of all adults, so as to define the remainder of their lives with the alleviation of collective suffering. They at times felt that maybe they all would have been more fortunate if Ana hadn’t been born, hadn’t suffered and died in such deplorable fashion, the way she did; but the truth remains that without the exact duration of her life, two people could not have conceived and been inspired by such injustice that was only exposed in the temple of Ana’s presence. Tom and Kate are so moved by the strength, resilience, optimism, and inexhaustible nature of the special needs community at large, that they have sworn immoderate allegiance to extolling their gallant lives and equating the heights of their nobility with the quality of societies treatment towards them: they do so through their efforts with Project Sloopy.