We are starting this campaign to raise funds for Elena's treatment and care. Our Elena was recently diagnosed with liver cancer. She was born with masses on her liver. After a year of medication and observation her doctors decided it was time to biopsy. These were discovered to be heptablastoma, a cancerous tumor that starts in the liver and affects children from infancy to age 3. EV was also born with Bohring-Opitz Syndrome , a rare genetic condition, which adds a layer of concern and complication to her diagnosis.
Elena will undergo chemotherapy in the hopes of shrinking the tumors for removal. We all know that chemo is a tough course of action, and she will have quite a battle ahead of her, but the thing is EV is a warrior.
EV's parents are a single income military family. One parent's tour with the Navy was ending and they decided as a family it was best for them to transition to civilian life. This gave them the time needed to devote to Elena's care. In addition, EV recently was promoted to big sister as the family welcomed baby Elizabeth Luz in late June. Your contributions will go directly to the family as they will have the costs of chemo and doctors visits, as well as living costs as they prepare to relocate from Oak Harbor to Seattle to be near Seattle Children's Hospital.
Anyone who has met Elena knows that she is beautiful and lights up any room! Please help our Lena have the best life as she prepares for the next phase of her battle. Join the many who are with her and are #ElenaStrong!
Please share this page as we would love to have as many people as possible in her corner. Also go to her Facebook page Lights for Lena: EV's Adventure through Bohring-Opitz for additional updates, including pictures and videos of our warrior!
If you are interested in a #ElenaStrong t-shirt, you can purchase on our Custom Ink Fundraising page .
Thank you for your support, thoughts and prayers!
Elena's story, as written by her mother Alyssa:
While working for my squadron, I felt ill - nausea, vomiting, etc. So it wasn’t surprising my pregnancy was confirmed shortly thereafter. As I began the routine prenatal check-ups, I received results that the initial ultrasound showed abnormalities. As anyone can imagine, this was stressful especially because I was separated from my husband, Cori, as we had two different duty stations within the US.
The second ultrasound confirmed the abnormalities and the doctors wanted to discuss termination. Cori and I knew termination would not be an option. We chose to have faith to know that God carries us through it all and has blessed us with a gift that is not to be abandoned.
After many more tests and throughout the stressful pregnancy, we decided it was best for one of us to leave the military. Since Cori’s tour was coming to an end, it seemed fitting for him to not re-enlist. This also gave him the opportunity to be there for the birth of our beautiful baby, Elena. Fortunately, I was able to change duty stations to be with him as he ended his military career.
Elena’s birth was nothing short of amazing. There was a team of doctors waiting for our Elena to take her first breath. While in the NICU, we discovered a cleft palate, heart murmur and hole, cysts in her kidneys, hemangiomas in her liver and on the top of her skin, and possible hearing loss.
Thankfully after two weeks in the NICU, Elena was able to come home. She qualified for the Birth to 3 program which enables her to receive Occupational Therapy each week since birth. Elena has fed through a NG tube since birth. We do not try oral feedings for fear of fluid going to her lungs. Elena has always been tense around the shoulders, neck and keeps her elbows bent. Birth to 3 decided to add Physical Therapy to her routine and she has slowly relaxed enough that her elbows relax and at times even her shoulders.
At 6-months, Elena received her hearing aids and her neurologist noticed fluid build-up (hydrocephalus). The fluid build-up affected Elena’s vision and we are now working with her to build those muscles. With the fluid build-up, we were given two options: a shunt or Endoscopic Third Ventriculostomy (ETV). We chose the latter and at 11 months, Elena underwent surgery for placement of a G tube and ETV. Just after celebrating Elena’s first birthday, Cori and I received the results of the genetic testing. It was then that Bohring-Opitz Syndrome (BOS) was first mentioned. We were given pamphlets about the syndrome and were left to process and educate ourselves. We have shared Elena’s diagnosis with our family and closest friends.
What we know today is that Elena is not her diagnosis, she is so much more. She is our light in this world and our testimony to God’s grace. She is beautiful and perfectly made because we know God does NOT make mistakes.
At 15 months, Elena is just over 18 pounds. She is strong, she is hope, she is beautiful. She will let you cuddle her and that smile can brighten any room! She loves light, thus her tagline…Lights for Lena.
As Elena’s journey continues to unfold, so does our with faith, perseverance and of course love.
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