Amara's Journey with Spinal Muscular Atrophy
Living in Nairobi, Kenya, Amara and her family built a care ecosystem that blends global telemedicine, local advocacy, and culturally attuned support to navigate spinal muscular atrophy (SMA) Type II.
Building a Cross-Border Care Team
Through an NGO referral, Amara connected with a tele-genetics clinic in London. Weekly video consults guide respiratory management strategies while coordinating with her Kenyan pediatrician.
- • Remote spirometry data shared via an SMS-enabled platform.
- • Local physiotherapists trained in SMA protocols through virtual workshops.
- • Genetic counseling delivered in Swahili and English for family planning decisions.
Adaptive Tech & Education
Customized seating, 3D-printed assistive devices, and speech-generating apps co-designed with a Kenyan makerspace boosted Amara's autonomy. A hybrid learning plan keeps her engaged with peers.
Assistive Innovations
Local technologists collaborated with global open-source communities to adapt joystick wheelchairs for Nairobi's terrain.
School Inclusion
Teacher training modules in inclusive pedagogy improved accessibility, complemented by remote mentorship sessions with SMA teens worldwide.
Advocacy & Community Impact
Amara co-founded the Rare Kenya Collective, amplifying policy advocacy for newborn screening expansion and access to SMA therapies.
- • Hosted policy roundtables with the Ministry of Health and global SMA Coalition.
- • Developed caregiver guides with mental health resources.
- • Established micro-grant program for assistive tech repairs.