REMOVING BARRIERS: OWEN’S JOURNEY
Owen’s story begins in the remote village of Shishmaref, Alaska. His family lives on a barrier island just north of the Bering Strait. With a population of only 530 people, it’s a place where family bonds, tradition, and heritage run deep.
At only 9 years old, Owen’s life took an unexpected turn when he was diagnosed with severe aplastic anemia, a rare, life-threatening blood disorder.
Owen’s Journey to a Cure
His family embarked on a daunting journey so Owen could receive treatment.
The closest medical center capable of providing the specialized care that Owen needed was two thousand miles away in Seattle. The prospect of leaving their close-knit community and facing an uncertain future was overwhelming, but they had no choice. Owen and his family set off on a path that would test their strength and determination.
Owen’s first bone marrow transplant brought a glimmer of hope, but it was short-lived.
The treatment was not successful and the transplant failed. Once again, Owen’s health hung in the balance. His family gathered their courage and they will try again.
Owen is preparing for his second bone marrow transplant and we wish him success.
Overcoming Financial Strain
The toll of his medical journey and the burden of being far from home continues to weigh heavily on Owen’s family. The financial strain is enormous.
Recognizing their challenges, the Icla da Silva Foundation provided crucial funds for transportation to Seattle. Understanding the high price of internet in Western Alaska, we also offered support for wireless bills, ensuring that Owen stays connected with his loved ones back home.
A Unique Perspective
We often provide meal assistance to patient families. A parent cannot work for many months while their child is in treatment. The combination of medical bills and living expenses can be overwhelming, especially when you are living in an unfamiliar city with no income.
Owen’s situation gave us a unique perspective. His father Christopher told us that, “back home in Alaska, we hunt and gather year-round for most of our food.”
They never had to rely on a grocery store for sustenance.
It was both unfamiliar and expensive. We provided the family with meal assistance so they can focus on Owen’s treatment.
Owen is still fighting his life-threatening illness. His family was forced to travel far from home and stay in a strange city. They had no one else to turn to.
The Icla da Silva Foundation stepped in to provide much-needed financial support for Owen’s journey to receive a bone marrow transplant.
A Father’s Gratitude
Owen’s father expressed profound gratitude for the help they received, “Thank you very much from the bottom of my heart and on behalf of my family.” His heartfelt words are a reminder of the dramatic impact we can make on a family in their darkest moments.
We wish Owen a successful transplant and hope that he and his family will soon be able to return home to Alaska.
You Can Help
The Icla da Silva Foundation’s patient assistance program is funded directly by people like you. The cost of transportation, housing, and meals during treatment are not covered by medical insurance.
Will you donate to provide critical financial assistance during treatment? Your support will ensure that a patient doesn’t have to postpone or delay their bone marrow transplant.
Your generosity will provide crucial support to a patient just like Owen.
You can watch the TikTok Owen’s Dad posted of his first transplant, shared on our YouTube channel.
Written by: Bret ItskowitchFarm Workers Travel 200 Miles for Their Daughters Treatment
REMOVING BARRIERS – ELLY’S STORY
Elly Moreno-Preciosa is a 6-year-old girl recently diagnosed with Severe Aplastic Anemia. Her only cure was a bone marrow transplant.
Fortunately for Elly, her 11-year-old brother was identified as a matching donor. She received her transplant on June 1, 2022.
Both of her parents are hard-working agricultural workers in Northern CA. They live 200 miles from the Lucile Packard Children’s Hospital, Stanford, which performed the transplant and is continuing treatment until Elly’s immune system is functioning properly.
The Family’s Challenges
Since Elly’s brother was identified as her donor, both parents had to stop working for several months to be individual caregivers for their children. COVID policies do not allow siblings at bedside. Her mother took care of Elly, while her father took care of their son.
Obviously, this had an impact on the family’s limited financial resources.
After the transplant, Elly’s father and brother returned home to work and attend school. But Elly and her Mom remained in the hospital due to complications.
Even after she is released, Elly will require follow-up visits for the next 6-12 months.
That’s a 400-mile round trip.
Obviously, being diagnosed with a life-threatening disease is distressing. When children are involved, worry and fear impact the entire family. The outlook is unknown.
Patient families are concerned about paying the bills while they are unable to work. In Elly’s case, they are also worried about transportation while half of the family is living 200 miles away for continued treatment.
Individually, each of these barriers can be intense. Combined, they can be extremely overwhelming.
The Icla da Silva Foundation removes barriers for patients who require a bone marrow or cord blood transplant. We provide emotional, logistical, and financial support during transplant and treatment.
Thanks to the generosity of our donors, we were able to help Elly’s family with a small grant for rent, transportation, and meals.
Elly is doing well. Her dad and brother travel 400 miles every weekend so the family can be together.
We look forward to learning when everyone is back home. We hope the best for Elly and her family.
Please consider making a donation that will remove barriers for patient families like Elly’s.
With your help, we will continue to make a difference for patients in need of a bone marrow or cord blood transplant.
Written by: Bret Itskowitch