We are writing to share the story of our amazing four-year old daughter, Hannah, who happens to have Down syndrome.
We often say that our daughter’s name should be Hannah “Rare”. She was born with translocation trisomy 21, the rarest form of Down syndrome that comprises 3-4% of the Down syndrome population. She is also a “rare” survivor of infantile spasms, a catastrophic epilepsy of childhood that affects about 5-10% of children with Down syndrome and represents the most prevalent cause of cognitive deterioration in the first year of life. Though she doesn’t have a formal diagnosis, she exhibits some features of the Down syndrome and autism dual diagnosis, which has an incidence of 5-7% in some studies.
What makes her story special is that despite these “rare” medical issues and with the support of the services offered in our state, she is also a “rare” survivor leading an extraordinary life.
During her first year of life, Hannah’s medical bills continue to mount with the cost of open heart surgery necessary to mend the 8mm hole in the center of her heart and with the seizure medicines necessary to minimize damage to her developing brain. Despite a generous private health insurance plan offered by my husband’s employer, the Katie Beckett Deeming Waiver filled in the gaps resulting from deductibles, co-pays, and coinsurance to allow Hannah to receive the medical care she needed to survive. Also, the health insurance premium reimbursement we received from the HIPP program allowed us to keep this generous private insurance coverage that paid for these specialized services.
Along with providing for her health care needs, trained therapists and social workers referred by the Babies Can’t Wait program helped to begin a therapy program for Hannah that would help her overcome the obstacles inherent in her dual diagnoses. They made a referral to the BEGIN program at the Center for the Visually Impaired to help her regain her vision that was devastated by the seizures. Two years later, Hannah was accepted into a program with the Marcus Autism Center on a government grant to help her unlock the power of communication to express the most basic of her wants and needs. It was with the assistance of these therapists (and a lot of financial investment and hard work on the part of us, her sister, her grandparents, private therapists and many supportive friends) that she took her first steps, both literally and figuratively, toward reaching her full potential.
Fast forward to today, four years later, Hannah is one of the most well-known members of her special needs preschool class at Nickajack Elementary, a Cobb County elementary school. She walks down the hall each morning greeting everyone from the policeman outside the school to the guidance counselor in the hallway with one of her famous waves and big smiles. She won a character award at her school last spring for Resilience, honored at the assembly in front of the school, teachers, and many parents. She participates fully in a music class and a gymnastics class in our local community.
From a personal standpoint, as her mother, one of her greatest accomplishments came when we finally heard her voice, stolen from the seizures as an infant, say my name. Now, with the assistance of her therapists at the Marcus Autism Center, she can not only say “Mama”, but “Dada”, and like any other strong-willed child “All done”.
All of Hannah’s accomplishments illustrate that the investments made by us, as parents, and these agencies, as recipients of government funding, pay dividends. In fact, we often joke that Hannah is the only safe investment in these current economic times. She works tirelessly for every gain and consistently overcomes obstacles standing in her way. She is on her way to achieving our eventual goal for her: to not only to be a productive citizen, but to be a taxpaying citizen of the state of Georgia and to be able to participate fully and meaningfully in her community.
One thing I would like everyone to know about Down syndrome can be best summed up by the following quote:
"There are souls in this world which have the gift of finding joy everywhere and leaving it behind when they go."~Fredrick Faber
These amazing people make our world a better place as they touch lives in our schools, our churches, our neighborhoods and our communities. They progress in school, participate in community activities, and remain capable of achieving gainful employment in adulthood. They touch many lives in the process and often leave indelible imprints on those whose people whose paths they cross.
Like my daughter Hannah, whose story is still being written, they aspire to be active, participating citizens of our great state and remain capable of reaching their full potential with both private and public investments made on their behalf. With these investments, it is our dream that all people with Down syndrome will lead extraordinary lives and that our daughter’s amazing story will not be so “rare” after all.