30 years of Child-Help

Child-Help originated from the International Federation for Spina Bifida and Hydrocephalus or IF (www.ifglobal.org).  IF was and still is the worldwide federation of all national organisations of people with Spina Bifida and Hydrocephalus and their families. It is an International federation of people with the disabilities Spina Bifida and/or Hydrocephalus (SB&H). It is an International Disabled People Organisation (I.DPO).

In 1992, IF’s president Björn Rundström and his vice-president Pierre Mertens organised a successful workshop on spina bifida & hydrocephalus at the World Congress of Rehabilitation International in Nairobi. That was IF’s first tentative move into the Global South. In 1995, Pierre Mertens took over the presidency of IF from his predecessor Björn Rundström. To meet the great needs of their peers worldwide, he started a department in the bosom of IF called IF-Child-Help.

In collaboration with the spina bifida team in Leuven, IF-Child-Help organised training sessions and encouraged local parent groups to organise themselves.  IF-Child-Help found resources in Norway and subsequently in Sweden for its work in Africa. To further develop IF’s European network, funding came from Europe.

IF-Child-Help started working with hospitals and rehabilitation centres in Kenya, Tanzania, Malawi, Zambia, Uganda and Sudan. With each project, a self-help group emerged and grew into strong organisations fighting for better and more accessible care and treatment in their countries. Along these national Disabled People Organisations, IF-Child-Help was able to give voice to the needs of its target group in the Global South.

IF-Child-Help was initially mainly built on existing initiatives in the Global South to develop knowledge on treatment and care of its target group with local partners.

To respond to the growing demand and need in the Global South, Child-Help International became an independent organisation with its headquarters in Belgium in 2006 and a regional office in Dar es Salaam. Child-Help continued to work closely with IF of which Pierre Mertens was still president until 2013.  Upon his departure from IF,  Pierre Mertens took the lead of Child-Help International and started branches in Belgium, Germany, the Netherlands, Tanzania and Italy. The new IF board asked him to continue promoting IF worldwide as a Global Ambassador.

Within the same spirit of IF, Child-Help International actively involves its target group in its policies and supports and strengthens the workings of its representative organisations. It encourages them to become members of IF and, where necessary, it also pays the IF membership fee when that would be a problem.

IF and Child-Help have a lot in common because they grew up together to become global players who serve the same target group. Their missions and visions are the same. Child-Help recognizes IF as the global organisation representing the voices of people with spina bifida & hydrocephalus. Child-Help focuses more on improving the quality of life of people with spina bifida & hydrocephalus in the global South. Child-Help takes initiatives together with the target group and professional healthcare providers to make care and timely treatment accessible in the Global South.

Child-Help became an expert in translating global knowledge about spina bifida & hydrocephalus into feasible solutions for its target group in the Global South. This knowledge is dynamic and needs constant updating. When it comes to neurosurgery, Child-Help International collaborates with networks of Surgeons such as PAPSA, AFNS, GAPSBIF and INGO such as Cure ne NeuroKids. 

To enable timely treatment for spina bifida & hydrocephalus in the Global South, Child-Help has started importing and donating the missing medical equipment to treat its target group.

Child-Help has already contributed to the surgical treatment of around 100,000 children with spina bifida & hydrocephalus.

Making care accessible sometimes means doing less, but better. Access to care for the target group can only improve by keeping it affordable for the patient and for society.

For example, Child-Help developed an affordable kidney-saving and continence programme for spina bifida. Child-Help initiated and contributed to the development of ETV/CPC, an alternative treatment for hydrocephalus.

To accommodate and support parents on their way to treatment, Child-Help developed shelters near reference hospitals.  Already 16 Houses of Hope from Vietnam across Africa to Guatemala offer reinforcement to parents in the care of their children in addition to accommodation.

With its partners worldwide, Child-Help has demonstrated that care for our target group is also possible in the Global South. As a result, we have a group of healthy adults with spina bifida & hydrocephalus who survived and are living a dignified life.

Child-Help promotes primary prevention of NTDs by supplements and food fortification of staple food.  Child-Help in cooperation with the Bo Hjelt Foundation supported scientific research into the causes of spina bifida & hydrocephalus and into improving treatment in the Global South.

Child-Help funded all this mainly through fundraising to individual donors from Europe.

To meet the growing demand, Child-Help International wants to diversify its income by relying on national and international structural grants, foundations and corporate funds. Child-Help wants to cooperate with national and international NGOs within a multi-year programme to realise its mission.