Muscular Dystrophy Support in Cameroon

MUSCULAR DYSTROPHY ASSOCIATION OF CAMEROON

Muscular Dystrophy and Rare Diseases | MDA Cameroon, a department under the umbrella of ACOHOF

Our mission: to bring a smile to children living with muscular dystrophy and other rare diseases, and to stand alongside their families with understanding, dignity and hope.

About MDA Cameroon · Our work · Fabrice’s story · Remembering Nelson · Historical photographs · Understanding muscular dystrophy · Contact and support

An association of children, parents and caregivers

The Muscular Dystrophy Association of Cameroon, abbreviated MDA Cameroon, brings together children and families affected by muscular dystrophy and other rare diseases, as well as parents and caregivers. Formed under the umbrella of the Afoni Children of Hope Foundation (ACOHOF), it gives particular attention to conditions that families may struggle to understand and for which support can be difficult to find.

MDA Cameroon operates as a department of ACOHOF. Its history is rooted in Bui Division in Cameroon’s North West Region, with a wider aspiration to connect and support affected families across Cameroon. The association’s historical newsletter records its formal recognition on 29 March 2011. That milestone forms part of its development within ACOHOF.

Our founding accounts describe families travelling between hospitals, struggling with the cost of care and facing isolation as their children’s needs increased. They also record the determination of children to attend school, make music and participate in community life. Those experiences continue to shape our commitment to awareness, inclusion and respect for every child’s abilities.

Our work and priorities

Community awareness and understanding

MDA Cameroon carries out awareness and sensitization activities, including door-to-door outreach and public campaigns. These explain muscular dystrophy and other conditions, challenge stigma, and encourage families to seek appropriate assessment when they notice difficulties in a child’s development or movement. Awareness is also about helping communities see the child’s personality, interests and potential.

Education about inclusion

MDA Cameroon sensitizes and educates teachers, families and communities about the need to include children living with muscular dystrophy, rare diseases and disabilities. Every child deserves the opportunity to learn, take part in school activities and participate with dignity. Our role is to encourage understanding and acceptance, and to challenge attitudes that exclude children because of their condition.

Family connection, encouragement and rights

The association gives importance to parents and caregivers learning from one another, sharing experiences and finding encouragement. It promotes the rights of persons with disabilities, equal opportunities and respectful treatment within families, schools and communities.

Seeking resources to meet identified needs

ACOHOF seeks funds, donations and partnerships that can help respond to the needs of affected children and families. These may include support towards healthcare, education, wheelchairs, games and other items that improve daily life and wellbeing. Assistance depends on resources and suitable partners becoming available. Fundraising objectives should not be understood as a guarantee that particular services or equipment are currently available.

The 2018 Plan of Action: a record of our priorities

The 2018 plan focused on children affected by muscular dystrophy and other rare diseases in Bui Division, alongside their parents, caregivers and the wider public. It proposed identifying and registering children, collecting information on family circumstances and assessing needs, using community announcements, hospital visits and collaboration with other stakeholders.

Its awareness activities included home visits, radio messages, flyers, placards, posters and basic education for families. Its fundraising activities included project proposals, identifying potential donors and community initiatives. Family empowerment objectives included seeking material and financial assistance, livelihood and vocational skills opportunities, and opportunities for parents and caregivers to form small groups and share experiences.

Monitoring, evaluation and assessment of impact were also included. These are historical planning priorities, rather than a claim that every proposed activity or service was funded or delivered.

Our history: the children and families behind the mission

The following accounts preserve stories documented in ACOHOF’s historical records and MDA Cameroon’s newsletter. Their detail matters: they show the barriers families faced, the people who stood beside them and the achievements that deserve to be remembered. Historical experiences of treatment are personal accounts, not recommendations for medical care today.

Kisife Fabrice: the search for answers that helped inspire ACOHOF

Kisife Fabrice was born on 19 June 1994, the first boy in a family of six. He had begun walking, but at about three years old he started having difficulty climbing stairs and going uphill. His parents sought answers at several hospitals over a number of years before they were told that he had muscular dystrophy.

The family’s search continued beyond hospitals. According to their account, they spent substantial sums seeking help from traditional practitioners, but the promised recovery did not come. Their experience illustrates how vulnerable families can become when they are desperate for answers and reliable information is scarce.

As Fabrice’s condition progressed, he used a wheelchair and needed extensive assistance with everyday activities, including getting into bed. His uncle continued looking for support and met Mrs. Maxine Strydom of the Muscular Dystrophy Foundation of South Africa. She shared that her own son had muscular dystrophy and took a personal interest in helping Fabrice and his family.

ACOHOF’s historical account credits her advice, together with the family’s struggle to find help for Fabrice, as an important influence in the foundation’s formation and the subsequent creation of MDA Cameroon. Family members and friends worked through the association to support Fabrice’s wellbeing. Attilio Galimberti and Daniella also joined efforts to help him and other boys in the community diagnosed with muscular dystrophy.

Fabs: “Your Light Gonna Shine”

Fabrice’s story is also a story of creativity and achievement. Performing under the artistic name Fabs, he drew inspiration from musicians he watched on CNN. He embraced the message “Yes I Can” and showed that a child living with a disability could contribute talent and ideas to the wider community.

With ACOHOF’s sponsorship, the contribution of choral singers and guidance from sound engineer Carlos Towa, Fabrice recorded an eight-track debut album titled “Your Light Gonna Shine”. Its songs carried messages about underprivileged children, faith and self-esteem.

The album was launched on Saturday, 30 July 2011, at the Kumbo Cathedral Parish Hall. The event featured the ACOHOF orchestra, with artistic support from N’ Caroline, Maculture and emerging performers. Fabrice launched alongside Hilda and the Young Singers of Mah, who were also sponsored by ACOHOF.

At an evaluation meeting on 1 August 2011, Fabrice warmly thanked ACOHOF and MDA Cameroon for helping bring his talent to public attention. ACOHOF highlighted his achievement as evidence that children with disabilities have abilities and aspirations that deserve recognition and opportunity. His music remains an important part of the association’s history.

Remembering Fabrice and the support offered to him

The historical newsletter records that George Mulcaire-Jones of Maternal Life worked to secure an electric wheelchair for Fabrice and generously offered it to him. Sadly, Fabrice died on 1 February 2012, before the wheelchair reached Cameroon. At the time the newsletter was written, the wheelchair and other donated items for people in need were still in transit.

The family account described his death as following a sudden heart attack. We retain that description as part of the historical record, without presenting it as an independently verified clinical finding. Fabrice’s passing, following Nelson’s death in 2011, brought profound grief to the families and the association. Fabrice is remembered for his music, determination and the role his life played in inspiring this work. May he rest in peace.

MUSCULAR DYSTROPHY PATIENT PASSES AWAY

Remembering Ngam Nelson | 11 April 2011

On Monday, 11 April 2011, Ngam Nelson, a Form Five student at Government Bilingual High School (G.B.H.S.) Tatum and a registered ACOHOF beneficiary living with muscular dystrophy, died at St. Pius X Catholic Health Centre in Tatum. His life, dedication to education and family’s efforts to care for him remain an important part of our history.

Nelson’s own words

When Nelson registered with ACOHOF in 2010, he described the beginning of his illness. The following excerpt preserves his voice from the account held in ACOHOF’s records:

“My name is NGAM Nelson. I am sixteen years old and I am suffering from muscular dystrophy. It started when I was 7 years old, starting from my legs i.e. on my ankle and at that time, I walked by tip toeing, and managed to go to school but as I grew up, it went up gradually to my knees which made them to become very weak. It became very difficult for me to move my legs, and when I insisted my knees would just go weak and I would fall down. At this stage, I started to be carried on the back everyday from the house to school and vice versa.”

His childhood and the journey to SAJOCAH

Nelson was born in 1994. As his account explains, he began experiencing difficulties at about seven years old. He initially walked on tiptoe and continued going to school. Over time, increasing weakness made walking difficult and caused him to fall. When he tried to stand, his legs trembled. Eventually, he had to be carried on someone’s back between home and school.

After years of difficulty, Nelson was taken to SAJOCAH, the Catholic rehabilitation centre in Bafut, Mezam Division, North West Region. His mother accompanied him, while his father contributed financially. Nelson’s account states that he was diagnosed with muscular dystrophy there.

His mother took him each morning for massage and exercises involving his arms and legs. He later received supportive footwear with metal components intended to hold his knees straight. He reported that these initially helped him walk more freely and more quickly. After a period of improvement, he was discharged and returned home.

Periods of improvement, followed by further difficulty

For several months, Nelson used the supportive footwear to move around. Later, his legs became stiff and painful. He continued trying to walk, but eventually could not stand despite his efforts. His parents decided he should stop wearing the footwear because it had become painful and difficult to use.

The family sought help from different hospitals and tried medicines, but money became a major obstacle to returning for further assessment. Nelson’s legs grew stiffer and his knees bent. He could no longer stand or walk and spent much of his time seated on a chair or on the floor, with very limited movement in his knees.

After he had spent several months at home, a Reverend Sister helped register him with an organization assisting persons with disabilities. He returned to the rehabilitation centre. His account describes stiffness affecting his knees and hands, and the use of plaster-of-Paris casts on his leg for several months. After the cast was removed, he reported that the leg was straighter.

He received another pair of supportive shoes and two crutches. He spent weeks practising with them and returned home pleased to be able to move around again. Walking remained tiring, however, and he could not stand for long because of pain.

Later, sharp knee pain again prevented him from using the shoes and crutches. Repeated attempts to stand increased the pain, sometimes leaving him crying in distress. A wheelchair was recommended, but his parents could not afford it after his father lost his job. The Reverend Sister eventually bought him a wheelchair. He could sit in it, although pain continued.

Family loss, financial hardship and determination at school

A few months later, Nelson’s father died. He had been the family’s principal breadwinner, and his death left Nelson, his mother and sisters facing severe hardship. His mother began cooking and selling local food to school pupils outside their home, trying to provide food and shelter while keeping the children in school.

Nelson’s frequent illness placed further pressure on her small business until it could no longer sustain the family. The cost of care remained beyond their means. Although people pushed him to and from school in his wheelchair, the daily journey left him tired and weak. His account describes increasing physical frailty and frequent absences through illness.

Despite these difficulties, Nelson performed well at school. He believed he could have achieved even more if he had been able to attend regularly. His story records both a young person’s commitment to education and the extraordinary effort of a mother trying to provide care with very limited resources.

The burial in Djottin: grief and a call for awareness

Nelson was buried in Djottin on 12 April 2011. ACOHOF was represented by Mrs. Kisife Brunhilda, then President of MDA Cameroon, and Ngam Elizabeth, ACOHOF’s first Administrative Secretary.

The convoy of family members, friends and sympathizers departed Tatum at 10:30 a.m. and arrived in Djottin at approximately 1:45 p.m. At the family compound, Nelson’s body was laid in state and tributes were delivered.

Speaking on behalf of ACOHOF, Mrs. Kisife Brunhilda expressed sympathy to the bereaved family. She also used the gathering to raise awareness of muscular dystrophy and explain the mission of MDA Cameroon: to help communities understand muscular dystrophy and other rare diseases, improve the lives of affected children, and educate persons with disabilities about their rights.

She emphasized that registration of cases with ACOHOF was free of charge. She described Nelson’s death as a great loss and asked those present to remember him in their prayers, that God might grant him eternal rest.

The question Nelson’s story leaves with us

The original tribute asked: “For how long shall we sit back and see our young boys pass away one after the other from this disease?” That question expressed the grief of families and the urgency that led them to come together.

The tribute called on parents, affected children and caregivers to unite, learn about care and seek access to appropriate help. It also pointed to medical progress, including the use of steroids in some forms of muscular dystrophy. Such treatment requires an individual medical assessment and professional supervision. Nelson’s memory continues to call us to greater understanding, support for families and opportunities for every child to participate with dignity. Together, we can continue this work of hope.

Understanding muscular dystrophy today

Muscular dystrophy is a group of genetic conditions that cause muscle weakness that worsens over time. The age at which symptoms begin, the pattern of weakness and the course of the condition vary by type. Some forms start in childhood, while others appear later. Duchenne muscular dystrophy is one childhood form that predominantly affects boys.

There is currently no cure for muscular dystrophy, but treatments can help manage symptoms. A healthcare professional should assess concerns about muscle weakness, walking or development and advise on appropriate care. Some forms can affect the heart or breathing muscles and require specialist monitoring. These conditions are not contagious, and a child or parent should never be blamed or stigmatized.

Signs that warrant medical assessment include delayed walking, frequent falls, difficulty running or climbing stairs, and increasing difficulty getting up from the floor. Toe walking, changes in posture and tight joints can also occur. These signs can have several causes and do not establish a diagnosis on their own.

Care may include physiotherapy, support with daily activities and medicines selected for the particular condition. Heart or respiratory care may also be needed. Families should discuss treatment with qualified clinicians. Historical accounts of casts, braces, exercises and medicines on this page describe individual experiences and should not be used as instructions for another child.

Medical information: NHS: Muscular dystrophy and NICHD: Treatments for muscular dystrophy. Reviewed for this draft on 10 November 2026.

Rare diseases and wider disability inclusion

ACOHOF’s historical descriptions also discuss families affected by albinism, intellectual disability, autism, fragile X syndrome and sickle cell disease. These are distinct conditions with different causes and support needs. Their inclusion in the association’s wider concern does not mean that all are forms of muscular dystrophy or that every condition is rare in every population.

Our shared concern is the dignity of children who may experience misunderstanding, discrimination or barriers to participation. Each child deserves accurate information, appropriate assessment and recognition as a valued member of the family and community.

Partnerships, participation and support

ACOHOF welcomes contact from families, caregivers, teachers, health professionals, volunteers, donors and organizations interested in awareness and inclusion. Support can help sustain community education, family connections and efforts to secure resources for identified needs. Potential partners can discuss suitable equipment donations, educational support, professional expertise or funding opportunities with ACOHOF before making arrangements.

Our vision is a Cameroon where children living with muscular dystrophy, rare diseases and disabilities can participate in school and community life with dignity, and where families can find understanding and appropriate support. Fabrice’s creativity and Nelson’s determination remain part of the history that guides that vision.

Contact ACOHOF about MDA Cameroon:
contact-us@acohof.org
WhatsApp: +237 672 970 666
ACOHOF Contact Us

Contact the association to discuss its activities and available information. Medical assessment and treatment should be provided by qualified healthcare professionals.

8. Partnership Opportunities

Fabrice’s journey shows that no family should face rare disease alone. ACOHOF and MDA Cameroon seek practical partnerships that connect families to medical, educational, social, and material support.

Medical and Rehabilitation Partners
Hospitals, clinics, physiotherapists, rehabilitation centres, respiratory care providers, and cardiac specialists can help improve diagnosis, monitoring, treatment guidance, and long-term care for children living with Muscular Dystrophy and related conditions.

Education and Inclusion Partners
Schools, teachers, parent groups, inclusive education advocates, and disability organizations can help children like Fabrice remain in school, participate safely, and be recognized for their abilities rather than defined by their condition.

Donors, Philanthropic Partners, and Community Supporters
Financial contributors, corporate partners, faith communities, diaspora supporters, and local volunteers can provide wheelchairs, assistive devices, nutrition support, transport assistance, family relief, awareness campaigns, and emergency care support.

Research, Advocacy, and Development Partners
Universities, researchers, rare disease networks, government institutions, UN agencies, and development organizations can support data collection, policy advocacy, caregiver training, public awareness, and stronger referral pathways across Cameroon.

9. Call to Action: Help Turn One Story into Many Futures

Fabrice’s story began with one family searching for answers. It now calls partners, donors, professionals, schools, communities, and institutions to help build a stronger system of care and inclusion for children living with rare diseases and disabilities.

Support can take many practical forms: funding medical referrals and rehabilitation, donating wheelchairs and assistive devices, sponsoring inclusive education, supporting caregiver training, providing transport or nutrition assistance, volunteering professional expertise, or partnering on awareness and advocacy campaigns.

We invite you to donate, partner, volunteer, advocate, or connect ACOHOF and MDA Cameroon with institutions that can expand diagnosis, care, rehabilitation, education, and inclusion for children like Fabrice.

Every contribution helps move a child from isolation to support, from stigma to dignity, and from uncertainty to hope.

Because inclusion is not charity—it is justice, opportunity, and shared responsibility.