Hello friends, my name is Emma Fiorella Lucero Pesantez, I will tell you a little bit about my life and the help I need this time from all of you. I am 2 years old and I was diagnosed with a cystic hygroma (cervical lymphagioma) at 3 months of gestation. This is a malformation of the lymphatic system where there is an obstruction. The location of this hygroma is at the cervical level that extends to the left anterior neck, causing a deformation of my lower jaw and therefore swallowing problems.

My parents have done everything in their power to see me happy and be a normal child. Since I was diagnosed with my malformation in pregnancy, it has been endless visits to the gynecologist, ultrasounds every 10 days and my mommy with the fear that something would happen to me. When I was born I had to stay 15 days in pediatric intensive care because I was at great risk of needing oxygen through a mask for the rest of my life and a tracheostomy, but thanks to the team of doctors and the strength of my family I left the hospital in good condition.

The team of doctors that consisted of a pediatric surgeon, neonatologist, pediatric pulmonologist and vascular doctor decided to start with sclerotherapy in my bad formation during my first 3 months of life, which gave a good result at the beginning, but the medicine they injected me with was a chemotherapy that along the treatment could cause other complications in my lungs and also I had already reached the limit with this medication. My mommy had to quit her job and give all her attention to me since I needed special care and the economic situation became more complicated, much more complicated since my daddy was the only breadwinner for some months and my medical checkups were every 10 to 15 days.

After this my parents started to move and see other treatment options for me, but the medication I needed was not available in Ecuador, which is why my mom started to process papers and visa for us, since our hope was in Canada. For my daddy the visa was denied and my mom had to gather her courage and the greatest love and take my little brother and me alone to a huge country full of opportunities, but in the end alone! To try out opportunities for me and see if I had a solution. We arrived in Canada on July 22, 2022, without knowing if they were going to help us, without an appointment with the pediatrician, without having any idea where to start, but we did it, we got an appointment for the pediatrician and an MRI for 4 months later. When the day came, I was seen by a full team of doctors (vascular doctor, pediatrician, cardiologist, hematologist) at the largest children's hospital in Canada, the famous Sick Kids Hospital, a beautiful hospital, full of many children with the same hope that I arrived with!

After 3 consultations where I had many blood and imaging tests, my mom met with the whole team and they explained that for the moment the only option was to be treated with sirolimus (Rapamune) an immunosuppressant in small daily doses, the only three big problems were that as it is an immunosuppressant, it was going to affect my defenses and I would fall sick almost always accompanied by anemias in a row, it would affect my defenses and I would fall sick almost always accompanied by anemias in a row, for this reason I had to be monitored and control the medication every 3 to 4 months by my head doctors here in Canada and finally the monthly price of a bottle of 60ml for ($1000).

Surgery to remove the lump or mass that you will see in my pictures, was completely ruled out for now as the surgery only removed the macro cyst momentarily and it would come back.

The stress and anguish started in my mom not knowing what to do since my daddy was far away from us and my mommy could not support us alone and could not work either because of the special attention I needed, my little brother had to start daycare, but my mommy did not have the economic means to pay and my brother did not know the language either and he got very scared in a vacation camp he attended for a week since he did not know how to communicate with his teachers.

We returned to Ecuador in November 2022 and since December 2022 I had to be hospitalized with a diagnosis of bronchopneumonia in January, February, March and April, for my parents it has been very difficult since they have had to spend too much money and finally I had to travel with my mom to Canada at the end of April to get checkups and to know why I am getting very sick since my left lung is the most affected, my little brother stayed with my daddy since they could not travel with us.