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Meet Judah, A Walking Miracle

“I’m going to walk and not grow faint”

When Katlyn began her undergraduate studies for a career in physical therapy, she had no idea that research for a class assignment would save her baby’s life.

Months before she began to worry about her then 18-month-old son’s increasing lack of movement, Katlyn was assigned to pick a neurology condition at random for a class report. The condition she chose, spinal muscular atrophy (SMA), affects just 1 in 6,000-10,000 children in the United States. She didn’t know yet that her son, Judah, would soon be diagnosed with the very same rare condition.  

SMA is so rare that most pediatricians and doctors are not readily aware of its signs. As Katlyn sought answers on her son’s condition, doctors would often dismiss his symptoms. 

“I kept pushing. I didn’t believe what I was being told,” says Katlyn. “My baby kept getting weaker. I knew something was wrong.” 

When Katlyn requested a neuromuscular test be performed on Judah, she and her husband, Matthew, who is a pastor, finally learned what was debilitating their son. Doctors told them that treatment options were limited, but Katlyn knew from her research that more could be done.

“I hit the ground running that day and was not going to stop,” says Katlyn. “We’re people of faith. We were on the floor for hours praying.”

One month after Judah was diagnosed, a new effective single dose treatment was released that could greatly improve the quality of his life. At $2.1 million dollars, it is the most expensive drug in the United States. After pleading with insurers with help from her community, advocates and a state legislator, their family’s marketplace insurance plan agreed to cover the full cost of Judah’s treatment.

Katlyn and Matthew’s prayers were answered again when they learned that Good Days would help to pay for frequent trips from their home in eastern Tennessee to a SMA-specialized medical team in Cincinnati, Ohio, related travel expenses and insurance premium costs so that Judah can get the best care possible.

“Good Days has just walked this out with us. They paid for us to go to Cincinnati to see the best doctors for his condition. They helped pay the insurance premium for our little boy,” says Katlyn. “Everyone there is so nice to us.”

“Before the shot, Judah could not sit anymore, he could not move his lower extremities at all. It was heartbreaking,” says Katlyn. “Now Judah is cruising. He can raise his arms as high as he wants to, and he is going to walk. We know it. He will run.” 

Judah is proud of his newfound strength. Each morning he tells his mother the bible verse, Isaiah 40:31, that he requotes: “I’m going to run and not grow weary. I’m going to walk and not grow faint. And I’m going to fly on wings like eagles.” – Judah, 3 years old.

Partner Spotlight

Dia De La Mujer Latina

Since 1997, Día de la Mujer Latina (DLM) has earned national recognition as a Latino 
community-based organization (CBO). DLM, which was founded by Venus Giles, a Latina breast cancer survivor, is dedicated to 
eliminating health disparities within the Latino community in 39 states, Puerto Rico and the Dominican Republic. In 2009, DML became the first Latino CBO approved as a Texas State Health Sponsored Certification Training Program for Community Health Workers and Instructors. Its success providing culturally proficient health education services is a result of its signature bilingual training modules. 

“Misinformation and miscommunication hinder people’s ability to receive the care they need,” says Giles. “Language is a social determinant of health. Miscommunication leads to mistrust. We have to provide information that is culturally and linguistically appropriate for the Latino community.”

DLM provides culturally and linguistically proficient health education services, facilitates early detection screening and preventative care interventions, promotes wellness with resource information and provides Community Health Workers and patient navigation training. To ensure that their communications are culturally appropriate, DLM reviews its content with teams in six different Latin countries. The non-profit focuses on eight core competencies, including  communication, interpersonal skills, coordination of services, community capacity building, advocacy, teaching, organization. They also offer knowledge-based skills for specific conditions including diabetes, hypertension, breast and cervical cancer, HPV & HIV, autism and heart disease in many US cities. 

Among DLM’s latest initiatives are the No Más, No More campaign, which addresses the  serious consequences of misinformation and miscommunication connected to the COVID-19 pandemic. DLM also recently launched a telehealth community navigation center that receives calls from across the country and motivates people to get recommended health screenings.

Their bilingual and comprehensive curriculum includes training modules in areas such as community engagement, patient advocacy, principles of health promotion, chronic disease management, financial navigation and health behavior change. 

KEY QUARTERLY UPDATES

Our translation partners at In-House Interpreting bring qualified medical interpreters trained and experienced in patient assistance programs to any phone call interaction with our Care Navigators when helpful. 

“As a former medical interpreter, I have witnessed patients with Limited English Proficiency struggle to start or stay on treatment due to confusion, barriers and limited means,” says Aaron Vallejo, director of operations for In-House Interpreting. “We are excited to partner with Good Days to help the individuals they serve overcome barriers to care and 
expedite the process of helping a vulnerable population receive and stay adherent to the treatments they need.” 

If you or a patient you work with would like specialized translation services when reaching out to Good Days, please ask a Care Navigator. 

JOIN US FOR VIRTUAL AND IN-PERSON CHRONIC DISEASE DAY EVENTS IN 2022

Thursday – April 7, 2022 | Minority Health Webinar

Thursday, June 9, 2022 | Caregiving in America Webinar

Wednesday, July 19, 2022 | Signature Livestream Webinar

Friday, July 8, 2022 | “I Stay Strong” Reception, Frisco, TX

Wednesday, July 13, 2022 | Congressional Reception and Len Rodgers Spirit Award Ceremony, Washinton D.C.

Wednesday, July 20, 2022 | Aloha Tower Lighting Reception, Honolulu, HI

Visit www.chronicdiseasday.org for helpful resources and more information.

A MESSAGE FROM THE PRESIDENT

CLORINDA WALLEY

While financial and travel assistance programs are core offerings that Good Days provides, we know that the community we serve requires support in other aspects of their health journey too. 

That is why Good Days has long led national initiatives and amplified public support of causes and policies that benefit chronic and rare disease communities. Now, to more accurately reflect our goals and the impact we have today, we’re excited to share our new organizational vision and mission statements. 

Our updated vision is a world in which no one has to choose between access to care and everyday necessities so that people can have more good days. Our mission is to lift the burdens of chronic illness through assistance, advocacy and awareness.  

Our charitable patient assistance programs provide a critical safety net for individuals whose health and finances are most at risk. Through advocacy and awareness initiatives led by Good Days such as Chronic Disease Day, we can join together and use our stories and voices to help lower the number of preventable illnesses, advance access to care solutions for unpreventable conditions and build healthier communities. 

Given our commitment to supporting individuals with chronic conditions, we always look for ways we can further eliminate barriers to care. Last year we announced live text-messaging and web chat options so that individuals can instantly connect with a Good Days Care Navigator. More recently, Good Days announced a new partnership with In-House Interpreting to provide healthcare-specialized translation services in more than 300 languages. Language barriers make an individual’s search for access to care a much more daunting experience. Working in tandem with our own Care Navigators, In-House Interpreting brings qualified medical interpreters trained and experienced in patient assistance programs to any phone call interaction so that if you do not speak English as your primary language, you still have the healthcare advocates you deserve.

We’re able to provide these needed programs thanks to the generosity of our donors. Thank you to all who make our mission possible. We are forever grateful for your support.

Sincerely,

Clorinda Walley, President

Good Days