Not all the children in the World have the chance to get a good medical treatment. Tristan is from Rwanda but has been living for three years in Belgium, as he suffers from Russel Silver Syndrome. Civil society is involved to allow him to stay in Brussels.
Tristan is a 6-year old boy from Rwanda. From birth, Tristan has been suffering from Russell Silver Syndrome (RSS), a very rare genetic condition that cannot be treated in Rwanda. RSS is a growth disorder occurring in approximately 1/50,000 to 1/100,000 births.
He now lives in Brussels but the Belgian administration (Office des Étrangers) is currently not following the application his father made to allow him to stay in Belgium. Jean Christian, Tristan’s father, told Brussels Express how Tristan’s life has been being for years and why he should stay in Belgium to be cared.
No relevant treatment in Rwanda
Tristan was born in Rwanda in 2011. When he was born, he weighed KG 1.6, which is not much. He has always been very sick and thin, but the doctors both in Rwanda and in Uganda could not assess what he had over its first year. In 2012, Tristan’s relatives met with a doctor from Saint-Luc’s hospital (Brussels), which put them in touch with doctors in Belgium as, even if he was not sure about the illness,he knew it was something very serious.
Supported by Alice Foundation, Jean Christian applied for a Belgian visa in 2012, which was refused. In 2014, he met with a doctor working at the embassy of Belgium in Rwanda and he supported him to get a temporary visa.
Jean Christian and Tristan have then moved to Europe in 2014, without Tristan’s mother and sisters. They had an appointment with Dr. Harbison (Mount Sinaï Hospital, New York USA) and Dr. Netchine (Trousseau hospital Paris, France) in Paris. While they were on their way to the hospital, Tristan got very sick. Because of Russell Silver Syndrome, he is asthmatic and often dehydrated. The doctors found Tristan was suffering from this syndrome and told Jean Christian they must start the treatment now. As he was not treated from birth, his situation was indeed alarming in comparison with the other children who suffer from the same illness.
This is why Jean Christian started the process to get a visa both from Tristan and himself at the end of 2014. In April 2015, the application was refused as the Belgian administration found he did not seem that ill and there were treatments available in Rwanda. To be clear, because of the syndrome, Tristan has been suffering from multiple complications linked to the disease from birth: body asymmetry, severe asthma with multiple crises, extremely oral and feeding difficulties, failure to grow and thrive, teeth implantation issues etc. He is today 6 years old, but he measures 100 cm (as a 3-year old child) and weighs 13 kg (as a 2-year old child).
Jean Christian said he was massively supported by the Alice foundation since 2014. He has been financially and logistically supported, as well as the Belgian social administration (CPAS) found Tristan could not be expelled to Rwanda, as he would have no chance to be cared there. Tristan’s father added his child has never met with an Office des Étrangers’ doctor. And all the doctors he is used to meet with have admitted his situation is alarming, as Tristan is “between life and death”.
Alice then published a petition online to “give Tristan, after years of pain and suffering, the official papers to remain on the treatment that will save his life”. You can find it here, with all the relevant information. After 5 days, about 3,000 people had signed it. The more the people sign the bigger the impact will be in the society.