I recently had the privilege of speaking with a dynamic mother and daughter team, Priscilla and Sammi Haney, on a Zoom call. It was so informative and inspiring.
Sammi lives with a disability called Osteogenesis Imperfecta Type III or Brittle Bone Disease, which affects her ability to walk, her development and even her breathing. I felt a special connection with them because my son, Robert, also lived with a rare disease which limited his life. However, as I spoke to Priscilla and Sammi, I was blown away by how mature and optimistic Sammi is, and how strong Priscilla has had to become.
As a twelve-year-old wheelchair user, Sammi is a real-life San Antonio superhero! This Emmy nominated actress has been featured on two television shows, and is depicted as a superhero girl promoting inclusion, diversity and representation in the children’s book, Savvy Sammi. (Yes, you should go order it right now!) She also has her own clothing line.
Sammi receives her homeschool education from her dedicated mom and is entering into the eighth grade. Hearing how much she has accomplished and her love for life has inspired me.
Sammi was diagnosed with Brittle Bone Disease before she was even born, which is not common for her rare condition. Her case is extremely severe. Doctors told Priscilla that her daughter wasn’t even guaranteed to be born alive. In the womb they could already see fractures forming within Sammi’s ribs, which is very harmful to the lungs. But through a miracle and a C-section, Sammi was born breathing.
Sammi and I also connected on her love of singing! She is a talented vocalist who has been featured on multiple TV episodes showcasing her talent. Sammi told me she was scared to sing on these shows, yet I could never tell by how well she performed. Sammi has very sophisticated music tastes, and it is admirable that she took the brave steps to use her voice.
I was interested to hear from Priscilla, Sammi’s mom, about her life as a caregiver. She shared how prior to the COVID pandemic, she and Sammi were very involved in the community. They were always volunteering, and doing activities with other families, especially those families with children with disabilities. However, out of safety for Sammi’s health, they haven’t been able to do events in almost 3 years.
Priscilla also shared that the multiple pieces of medical equipment that are needed to properly care for Sammi are very outdated. The updated equipment is very expensive, and extremely hard to acquire without substantial resources. Sammi has been waiting for many years on the interest lists to receive services from either the Medically Dependent Children Program (MDCP) or the Community Living Assistance and Support Services (CLASS) Medicaid waiver programs. These are two support service programs which provide children under twenty years old with the disability resources that they need.
I was really disappointed to hear that although Sammi’s condition is extremely severe, she has been on the waitlist for years. This is a very common scenario I hear about when speaking to families in the disability community. I know the problem well.
Sammi and Priscilla are such strong and amazing people. Despite all their struggles both of them continue to think of others and make the most out of life. Their positive spirit is truly inspiring.
Lastly, I asked what are Sammi’s favorite places to visit in San Antonio? They recommend Morgan's Wonderland, Hemisfair Park and the San Antonio Zoo for families caring for children with disabilities. In the future, they hope to see people judge others less, locate more wheelchair accessible areas in San Antonio, and most of all … encourage our San Antonio nonprofit advocates to help children like Sammi afford new medically necessary equipment.
We are committed to continue our conversation with Priscilla to help find solutions and assist with locating affordable specialty equipment for Sammi. If we truly believe what we say about inclusion and caring for those in the disability community, Sammi’s family should be in our view.
Priscilla and Sammi, I am so grateful for your time and our honest conversation. You are not alone. XO