Thanks to a program that allows intravenous treatments at home, two-year-old Navy is having an active Christmas.
After a spending more than a month at B.C. Childen鈥檚 Hospital, where she survived a blood clot described as 鈥渢he worst we鈥檝e ever seen,鈥� the 91原创 girl is back home in Willoughby with mom Charlene, dad Mike and older sister Hallie, after she was diagnosed with a rare autommune disorder.
Charlene (who asked that the family surname not be published), said the family plans to 鈥減ack in all of their fun events,鈥� now that Navy is home.
鈥淲e are just so excited to spend it together,鈥� Charlene told the 91原创 Advance Times.
It feels like they are working against the clock, she said, with Navy set to undergo a bone marrow transplant early in the new year.
鈥淲e鈥檙e spending all of our weekends with friends and family and doing all the Christmas lights, and driving around looking at people鈥檚 houses,鈥� Charlene summarized.
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A few months ago, Navy was rushed to BC Children鈥檚 Hospital with a high fever and abscess on her liver, ending up intubated in in the Pediatric Intensive Care Unit, in critical condition.
鈥淓ven a week before all of this started you would have never known it,鈥� Charlene said. 鈥淪he was healthy, she was happy, we had very few colds in our house.鈥�
Navy had masses on her liver, and was so swollen that fluid was leaking from her ankles.
鈥淪o much swelling in her abdomen that her lungs couldn鈥檛 expand enough on their own that she required support just to breathe,鈥� Charlene explained.
鈥淎 blood clot that spanned from her liver to her heart [was] referred to, as the 鈥榳orst we鈥檝e seen,鈥欌�� Charlene recalled.
A battery of tests determined the cause: a rare autoimmune disorder that makes it impossible to fight certain bacterial and fungal infections, called Chronic Granulomatous Disease (CGD).
Navy was only the third British Columbian in 20 years to be diagnosed.
To fight it, multiple treatments and a long course of IV antibiotics were required, which meant the hospital would be her home for the foreseeable future.
Or it would have been, if it wasn鈥檛 for PIVOT, for , a new program that began early this year, made possible through donations to the .
鈥淭hey trained and supported us to give her the IV antibiotics at home instead of in hospital,鈥� Charlene said.
鈥淪o that鈥檚 12 weeks of our life back that we wouldn鈥檛 have had had it weren鈥檛 for that program.鈥�
She鈥檚 urging people to donate to support the program at , where a photo of Navy can be seen, with other young patients, on the main page.
Since PIVOT launched, estimates are it has helped children collectively reduce their time at BC Children鈥檚 Hospital by over 800 days.
Now that she鈥檚 home, Navy, who needs nine medications a day, sits down and points to her arm when she knows it鈥檚 time for a shot, which has earned her the nickname 鈥淣avy Bravey.鈥�
鈥淪he鈥檚 definitely getting better,鈥� Charlene said.
鈥淪he鈥檚 smiling, she鈥檚 happy and that was all we really wanted when we were in the hospital. We know that there鈥檚 a long journey ahead, but we鈥檙e enjoying it now.鈥�
