It was a bittersweet moment for Allison D’Ambrosio Bones recently as the Gilbert Water Tower was lit orange for three days.
The Litchfield Park resident said losing her 4-year-old son Travis is the reason behind the color change. They have friends in Gilbert.
At the same time, it also marked another milestone in Bones’ effort to raise awareness of the birth defect that took Travis from her.
Travis died from isolated congenital asplenia, a genetic birth defect that leaves a child with a partial spleen, none at all or a nonfunctioning organ.
In Travis’ honor, Bones started T.E.A.M. 4 Travis, the only organization in the world dedicated to raising awareness of ICA.
“Travis brought laughter, smiles and fun to every moment,” Bones said. “He collected friends everywhere he went. T.E.A.M. 4 Travis helps me share his light and love of life and does something good to help other kids.”
Gov. Doug Ducey declared Aug. 25, the third anniversary of Travis’ death, T.E.A.M. 4 Travis Asplenia Awareness Day in Arizona.
Bones shared her son’s story and her nonprofit’s mission with the Gilbert Town Council and invited them to see the Gilbert Water Tower lit in Travis’ favorite color from Aug. 25 to Aug. 27.
“I hope that people will see the water tower and take a chance to learn more about asplenia,” Bones said. “I hope that they’ll consider Travis’ story and reach out to us to look for other ways to get involved.”
The spleen is a vital part of the immune defense system. It fights against infections by producing antibodies and filters our blood, removing old red blood cells and bacteria from circulation.
Without a functioning spleen, a bacterial infection could be fatal to a newborn or child.
“Travis was perfectly healthy,” Bones said. “We never had any indication that he was born without a spleen and that the spleen was such a critical part of a young child’s immune system.”
In ICA, there are no other developmental abnormalities, which makes detection of the life-threatening condition difficult.
In addition, the spleen is not palpable and prenatal screenings for the defect do not exist. For this reason, ICA is severely underdiagnosed and oftentimes not detected until after a child dies.
It wasn’t until Travis suddenly passed from sepsis that his autopsy revealed his ICA.
“I figured that if I didn’t know, as involved and overprotective as I was, how many other parents are out there with children that asplenia is just waiting to strike?” Bones said.
Bones wants to prevent other families from experiencing such a tragedy, so T.E.A.M. 4 Travis focuses on raising awareness; providing information about ICA to medical and patient communities; promoting newborn screenings; and supporting medical research to further understand ICA’s cause, diagnosis and treatment.
T.E.A.M. 4 Travis is hosting a golf tournament Oct. 17 at Topgolf in Glendale to celebrate his life and support the mission to end ICA child mortality.
One of the goals of the event is to raise as much money as possible to fund ICA research.
Uplifting Athletes, a nonprofit organization serving the rare-disease community, opens an application period at the end of each year for organizations seeking research grants.
If T.E.A.M. 4 Travis were to be selected and if it can provide at least a $10,000 match, Bones’ nonprofit could further asplenia research.
T.E.A.M. 4 Travis also has a rock project to raise asplenia awareness all over the world. “What started as a quirky idea has turned into a global movement,” Bones said.
In June 2019, Travis’ “Aunt Rena” created the Orange Rock Project to spread ICA awareness and happiness.
Individuals can paint a rock orange and write “#SpreadTravisLove” on top, then leave it anywhere in the world. Travis rocks have been found in all 50 states and several foreign countries.
“When you see orange, think of a happy little boy who was gone too soon,” Bones said. “Help spread his legacy.”
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