Little Ethan's dream fulfilled by the Liam’s Rainbow Foundation |23 November 2023

Ethan Fanchette had a special wish for his fourth birthday last Sunday – to become a ‘gard’ (policeman). How could this wish be fulfilled for a young boy battling mitochondrial disease? Fortunately, the Liam’s Rainbow Foundation, closely supporting Ethan and his family, turned this heartfelt desire into a reality yesterday.

Following his doctor's appointment at the Seychelles Hospital, Ethan was warmly welcomed by members of the Liam’s Rainbow Foundation. Erica Rangasamy, the founder of the foundation, shared that “Ethan is one of our young clients, and during a conversation on his birthday, he expressed his wish to be a ‘gard’. Acting promptly, I contacted the Police Force and conveyed this young boy's desire. Their response was swift, and together, we decided to make his dream come true. We first met Ethan during the Liam’s Rainbow Foundation's visit to Busy Bee Day Care at Takamaka. Touched by his story and the challenges faced by his family, we committed to providing emotional support. We are grateful that the Foundation can make a positive impact on their lives at this moment.

Christelle Hoareau, Ethan's mother, expressed her emotions when speaking to Seychelles NATION. “Ethan was diagnosed with this disease in India when he was two years old, and he still experiences fits when he falls sick. While he can live a relatively normal life, there are precautions we must take to protect him. Recently, the doctor advised us to limit his time in the sun and avoid letting him get tired. Since his childhood, we have faced numerous challenges. I am his caregiver, doing my best to take care of him. The hardest part for me is when he is unwell, weak, and struggling. However, I am grateful to Liam's Rainbow Foundation for the support our family is receiving."

At 3pm, Ethan, dressed in his police uniform, was met by police officers. He then embarked on a motorcade tour that concluded at the clock tower. He acted as a traffic police and then visited State House, where he had the opportunity to see motorcycles and even had the bonus of meeting President Wavel Ramkalawan. He has a love for the big motorcycles and enjoyed his time on one.

Stella Afif, the vice-chairperson of the foundation, spoke about the ongoing project to construct a facility for children between the pediatric ward and the Botanical Garden. “The project is already under way, and the contractors said they will deliver the building in six months. With a budget of R3 million, the facility will benefit children in the Liam’s Rainbow Foundation programme and other children. We rely on the generosity of donors to turn this project into a reality for the children of Seychelles.”

Mitochondrial disorders, often genetic and running in families, can lead to a wide range of symptoms. These may include developmental delay, hearing loss, seizures, strokes, heart failure, and diabetes, in varying combinations. Multi-organ involvement is typical, with disease severity ranging from severe, beginning at birth, to mild disease that may not become apparent until adulthood. Sometimes symptoms can manifest abruptly when the child is faced with another illness.

Currently, there is no cure for mitochondrial disease. Treatment primarily involves supportive therapy, along with the use of vitamins and supplements. Treatments are personalised based on the specific mitochondrial disorder and the symptoms a child presents. Due to the heightened sensitivity of children with mitochondrial disease to even minor illnesses and stressors, it is crucial to closely monitor their overall health and collaborate with specialists to ensure comprehensive care for the ‘whole child’.

Vidya Gappy

Photos: Liam Rainbow Foundation