By Juan Galbete
Luz Nery landed in London on the 8th of July 2014 with a feeling of uncertainty. Coming from a small coastal town in Colombia, Luz travelled to London with her son Didier, who has CMN.
Didier was successfully operated on in 2012 in Bogotá, Colombia. It was an operation which required the focused hard work of a group of surgeons, including the British plastic surgeon Neil Bulstrode, from Great Ormond Street Hospital in London. Three quarters of Didier´s body were covered by a giant mole situated on his back which appeared similar to a turtle shell.
According to the recent CMN research carried out at Great Ormond Street Hospital, these giant moles appear due to the mutation of the NRAS gene, when the baby is still developing in the womb, and so these moles are visible from birth. Didier´s case was known primarily through Colombian media and later by international media, including the documentary called “The Turtle Boy”.
For many years Luz has endured living with fear and worry about her son Didier. Those feelings have been part of her journey since his birth. Luz explains shyly and apprehensively about the painful journey that both she and Didier have experienced up to the last of his 25 operations which completely removed the protruding mole from Didier´s back.
“Before his birth I didn´t know that Didier had this problem. The doctor said that his condition was normal when he was born and that the mole wouldn´t grow anymore. His words calmed me a little but I was still worried”, Luz remarks. When Didier was only eight months old Luz realized that his mole was getting bigger and bigger. Then she decided to take him to a specialist. Luz points out that “the doctors carried out a very expensive consultation on Didier. At that moment the mole had increased a lot and after that consultation I brought Didier to Bogotá, where the doctors told me that Didier had a benign tumor.” Didier was two years old at that time.
Luz has lived all these years with Didier´s condition on her mind whilst still trying to provide him with the best life conditions she could despite the material and economic difficulties which they face. She continues to face these economic hardships and had to move to the capital Bogotá because there were no job opportunities in her hometown in the Department of Córdoba in the Caribbean coast. She works 12 hour shifts in a restaurant to support her family and build a future for Didier. Travelling to Bogotá in the holidays, Didier lives with his grandparents and attends school in his hometown. Luz is torn that she cannot have Didier with her, as she would not be able to look after him and work at the same time. Luz´s capacity to care for Didier has no boundaries. While looking at Didier tenderly Luz recounts how the heat of the mole on his back combined with the humid conditions didn’t allow him to sleep so she had to fan him manually due to a lack of electricity.
Furthermore, Didier lived isolated from the rest of the children. He could not go to school and had to resign himself to watch the other kids playing while he could not even run due to the heavy burden of the mole on his back which weighed around 5kg. “Before the operation he could barely walk or play. He used to enjoy observing the other children playing and I noticed that he wanted to do the same but the mole stopped him”, Luz says. In addition to this, there was a lack of understanding from some people in the local area which Luz tried not to pay attention to.
When Didier was six years old his case was covered by the Colombian press and people began to get interested and to show solidarity with Luz and her son. Thanks to the media exposure of the most extreme CMN case known up to date, Luz and Didier were able to visit London with the support of Caring Matters Now and May Wong. The example of bravery and hope represented by his case encouraged Caring Matters Now to help Luz and Didier to visit the UK with the aim of enabling them to meet other CMN families in similar situations to them as well as taking part in CMN research.
Luz confesses that she felt overwhelmed along with some feelings of uncertainty before arriving in London. “I was quite scared before coming to London. I didn´t know how the contact with the other Mums would be but I have felt huge support and Didier is even more confident. In London he realized that there are more kids like him and he began to feel more self-assured.” This journey has helped not only Luz and Didier but also many other families living in the UK to share experiences.
Moreover, Luz remarks on the importance of the families in being open when meeting each other. “We understand each other perfectly and I feel relieved to know that Didier isn´t alone and that he feels happy with the other children with the same condition”, Luz says. She also adds that “it is valuable to learn from one another.” “I have admiration for the other families. I have learned a lot from them because they don’t mind showing their CMN conditions. They are very open and because of this other people don’t make a big deal about the condition either. We are more curious in Colombia.” Luz says that in her country she and Didier had the opportunity to meet only one CMN case in Bogotá but they could not maintain contact with the family.
Thanks to the operation Didier can do everything he missed out on all these years. Didier loves to play football now which was something he could not do before. During his stay in London “he felt at home”, Luz says. Nowadays Didier is attending school; he walks normally and plays with the other kids. Luz points out that after the operation she felt a big relief for her son. “Seeing Didier happy is my happiness. After the operation he was very anxious to do everything he couldn’t do before.”
Soon after Didier´s arrival to London he was interviewed by Sky News and This Morning on ITV. Despite these overwhelming experiences Luz has some gratitude towards the media also. She explains that “when the media covered Didier´s case in Colombia, doors opened.” “The opportunity of surgery brought a new sense of hope. I believe that thanks to people finding out about our story, lots of help can reach us so we can try to find solutions”, Luz adds.
In London Luz and Didier met Dr Kinsler, the doctor in charge of the CMN research at Great Ormond Street Hospital. Didier is going to participate in the CMN research which aims to find a treatment for CMN. “Since Didier was eight months old until he was six years old there was almost no hope. Now I see the future with other eyes compared to before”, Luz says. “I am glad to know that we have the support of Caring Matters Now and that Didier is part of the research. All the CMN families are one. I believe that joining our forces we are going to find a solution. I have a lot of hope and faith in God that a cure to CMN will be found.”