Vika's story for Rare Disease Month

Rare Disease Day takes place on the last day of February each year. The main objective is to raise awareness with the general public and decision makers about rare diseases and their impact on patient’s lives. Speak Now for Kids would like to take this opportunity to honor children with rare diseases and their families. Today, we spoke with Vika’s mom, Ashlee, to learn about her experience raising a daughter with a rare disease.

Speak Now for Kids (SNFK): Please tell us about Vika.

Ashlee: Vika was born with TAR Syndrome and has challenges every day enduring life with a chronic condition. We adopted Vika from the Republic of Georgia almost a year ago and we’re excited for the care that she can receive in the United States. Vika is currently under great care at Penn State Hershey Children’s Hospital. She relies on multiple specialists for care, including hematologists, orthodontists, and endocrinologists. Each physician has taken the time to understand Vika’s complex needs and tailored the treatments for her in mind. In addition to her TAR Syndrome she has Blount’s disease, which is severe bowed legs. She has already outgrown one set of braces in just two months!

SNFK: Why is it important for you to share Vika’s story and advocate for children’s health?

Ashlee: Not too long ago, I was a pediatric nurse and took care of children with complex medical needs. I saw the vast needs of these children and decided to seek adoption of a child with medical needs. We hope to give Vika a life that wouldn’t have been possible if she was left in an orphanage. Adults need to speak for these children as they cannot yet advocate for themselves. As a parent, I see the daily challenges that Vika must overcome to keep up with her peers. Access to health care and specialists is critical for her to continue to grow and thrive.

SNFK: How is Vika doing today?

Ashlee: Vika is starting to catch up to her developmental milestones. Every day, I see our little toddler transitioning to a little girl. Because of the leg braces, therapies, and health care services, she is thriving! She is becoming a world traveler! We travelled to China for a family visit but after two months, it became clear that she needed the services back in the United States. So, this little lady has now taken a couple of flights across the world!

Recently, Vika has started to be interested in princesses and ballet. Our last Christmas was filled with Mickey and Minnie Mouse, ballet, princesses and dinosaurs! We love seeing the world through her eyes.

SNFK: What do you want other parents to know?

Ashlee: I was nervous to apply for Medicaid after we adopted Vika. I felt like I was cheating the system because we agreed that we could afford the care for Vika when we signed her adoption paperwork. Fortunately, I had a job that had medical insurance benefits, but it did not cover all her expenses. After discussions with her care team, it was clear that she would need additional treatments to thrive. With their support, I felt more comfortable applying and accepting medical assistance benefits. It’s hard to hear “your daughter will qualify for benefits until she is 18 because she has a disability.” As a parent, I see the challenges, but I don’t usually define it as a disability because Vika is so able in many ways. Other parents should learn to accept help, keep reaching out to support organizations, and continue to better understand the possibilities of their child. I can never stop advocating for Vika to be successful in life.


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commented 2019-03-01 11:11:12 -0500 · Flag
yes, every parent with a child with a rare syndrome or condition should contact your local or State Part C program . They can help you short out which funding resources your child may qualify for . There are federal and state funds but they are different in every state . So , first ask your Part C State program.