Eight-Year-Old Alison Has Had Seven Ops for Rare Gut Disease
Alison Curpanen, 8, lives with Hirschsprung disease in Mauritius. Her mother quit her job to care for her as the family seeks support after multiple surgeries.
An eight-year-old girl from Mauritius has already undergone nearly seven surgical operations because of a rare intestinal condition that has upended her young life and placed an enormous strain on her family.
Alison Curpanen was diagnosed with Hirschsprung disease, a congenital disorder in which certain nerve cells are missing from part of the large intestine. Without those nerve cells, the affected section of the bowel cannot push waste through normally, causing dangerous blockages. The condition affects roughly one in every 5,000 births worldwide and requires surgery to remove the non-functioning section of the intestine.
Alison has needed repeated operations since her diagnosis, and surgeons have recently performed a further procedure aimed at closing her colostomy. A colostomy is a surgical opening made in the abdomen that allows waste to exit the body into an external pouch when the intestine cannot function normally. Closing it is a significant step, but the road to recovery remains long and uncertain for a child who has spent much of her short life in and out of hospital.
Her mother, Emilie Curpanen, took the difficult decision to leave her job in order to care for Alison full time. That choice, while made out of necessity, has left the family without a second income and deepened the financial pressure they face alongside the medical challenges.
Hirschsprung disease is little known among the general public in Mauritius, and families dealing with rare conditions often find themselves navigating a healthcare system and a social support network that is not always equipped to meet their specific needs. The cost of repeated hospitalisations, specialist consultations and post-operative care can be considerable, even where public health services cover a portion of treatment.
What this means: Alison's story illustrates the quiet but serious burden that rare childhood diseases place on Mauritian families. When a parent must stop working to become a full-time carer, the household loses income at the very moment medical expenses rise. There is currently no dedicated national fund in Mauritius specifically for families of children with rare diseases, meaning many rely on community fundraising or the support of charitable organisations to get through prolonged treatment periods. Raising public awareness is often the first step toward building that wider support network.
Source: Le Defi Media
Frequently Asked Questions
What is Hirschsprung disease and how is it treated?β
Hirschsprung disease is a congenital condition where nerve cells are absent from part of the large intestine, preventing normal bowel movement. It affects about one in 5,000 births. Treatment requires surgery to remove the affected section of bowel. Some children need multiple operations, including the creation and later closure of a colostomy, an opening in the abdomen that allows waste to exit into an external pouch while the intestine heals.
What support is available in Mauritius for families of children with rare diseases?β
Mauritius does not currently have a dedicated national fund specifically for families of children with rare diseases. Public healthcare at institutions such as Candos Hospital covers many surgical costs, but families often face significant additional expenses. Many rely on community fundraising, religious or neighbourhood networks, and charitable organisations. Raising a case publicly through Mauritian media is a common way families seek assistance.
Can a parent in Mauritius receive financial help if they have to stop work to care for a sick child?β
Mauritius has a social welfare system administered by the Ministry of Social Integration, Social Security and National Solidarity, which offers some assistance to low-income households. However, there is no specific carer's allowance equivalent to those found in some other countries. Families in Alison's situation typically apply for general social aid and may also seek help from non-governmental organisations or public appeals.
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