Quy's Story with the Grace Children's Foundation

Quy, his mother and sister being met by Dr. Dustin Nguyen from the Youth and Hope Foundation, at JFK International Airport. (February 2019)

In May 2013, Quy was only 6 months old when he was diagnosed with Wiskott Aldrich Syndrome (WAS). Wiskott Aldrich Syndrome is an X-linked recessive immunodeficiency characterized by triad-recurrent bacterial sinopulmonary infections, eczema, and bleeding diathesis caused by thrombocytopenia and platelet dysfunction.

Most patients with WAS do not survive past the age of 5 and need a bone marrow transplant operation as soon as possible following the diagnosis.

After traveling throughout Vietnam with his family to numerous hospitals and meeting with physicians for pre-BMT evaluations for many years, Quy’s case was introduced to the Grace Children’s Foundation (GCF) and the Children’s Resource Exchange (CRE) in April 2016.

Mary Beth Fisher, Development & CRE Program Director visiting Quy in Ospedale Pediatrico Bambino Gesù with Quy’s sister. (October 2019)

Quy and his sister in Ospedale Pediatrico Bambino Gesù, in Rome, Italy. (October 2019)

In February 2019, Quy and his family traveled from Vietnam all the way to New York City where he was then treated at Children’s Hospital at Montefiore. Through a series of evaluations and connections made through the National Institute of Health (NIH), Quy’s care was then coordinated for him at Ospedale Pediatrico Bambino Gesù in Rome, Italy. Quy and his family left NYC for Italy in October 2019.

In December 2019, Quy successfully underwent a bone marrow transplant under the supervision of Dr. Franco Locatelli who has pioneered a groundbreaking treatment in BMT that will save countless lives, including Quy’s who will celebrate his 8th birthday in November, 2020.

Since 2013, Quy has traveled more miles on his journey than most of us will do in a lifetime. He has suffered unimaginable setbacks during his illness and came too close to losing his life, had Ospedale Pediatrico Bambino Gesù not come forward at the last minute. The majority of the physicians did not know one another. All of the physicians involved were connected by way of the Children’s Resource Exchange (CRE) network.

Nancy Robertson, President & CEO, visiting with The Ronald McDonald House (Roma Bellosguardo) that hosted Quy’s mother & sister while Quy was awaiting his bone marrow transplant. (October 2019)

If the CRE digital platform had been up and running, Quy’s physicians/hospital in Vietnam would have been able to pinpoint where clinical trials were being conducted for WAS in a matter of days rather than the years it took.

As we roll out 1 TO 1 MILLION, the CRE digital platform will demonstrate the power of combining human conscientiousness with technology, accelerating access to vital healthcare resources. We, and all of our partners in healing, can change the outcome for children in need globally…scaling the solution to the magnitude of the problem.

Quy recovering post-BMT in Ospedale Pediatrico Bambino Gesù, with his sister visiting. (December 2019)

Quy, post-BMT operation, with Valentina Bianco, GCF Program Coordinator – Italy.(December 2020)

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