your contribution is a hope for Amir

my name is Radhia I am 45 years old and mother of three children, wissel 11 years old, Jaliss 8 years old and Amir 2 years old. I am a mother who takes care of her little family, loving and smiling with a heart to offer, we lived a simple life but full of happiness, we lacked nothing. We did not suspect that life will change when my last child Amir arrives in our family with great health concerns. During my short stay in France I had a pregnancy complication that led me to the emergency room of the hospital that day. The doctors forbade me to fly again and hospitalized me. The medical staff told me that my health was at risk because I was carrying a seriously ill baby. It was a shock for me because my first ultrasounds were normal. according to them I just had to take the decision to have an abortion or to wait for the birth of the baby who will die after his birth. I am a very affectionate mother I had difficulty killing my son who moves in my belly constantly, I preferred to wait for him and then let heaven take care of him, so as not to have any remorse for having killed him. On December 21, 2017 at 6:00 a.m. my son came from our life but was admitted directly to neonatal resuscitation where he stayed 6 months and I stayed with him. It seems like heaven granted him to live even with his health problem. Amir is suffering from polymalformative syndrome. When he was discharged from the hospital, we were given a full program of surgical treatment and multidisciplinary follow-up. My short stay is getting longer and longer. My two other children and their Dad joined me, they could no longer bear our separation, we are a united and very attached family. 12 months passed with great difficulty. We gave up our social life and our professional career to save our child, the pathology of our child cannot be taken care of in our country because of the lack of means and medical skills for this disease, this child came into this world with his illness without wanting to. We the parents have done everything to keep the social balance by putting all our savings to treat our child in good conditions. But we are a family not rich enough to live under other skies and fight against the disease of our child. In May 2019 the geneticist calls us to tell us terrible news our child is suffering from "Kabuki syndrome" a very rare disease characterized by a delay in development. and mild to severe disability. Affected individuals may also experience seizures, unusually small head size (microcephaly) and poor muscle tone (hypotonia). Some have eye problems such as rapid and involuntary eye movements. even blindness during growth. dislocation of the hips spinal deformity, heart deformity and kidney malformation. My son has to this day undergone several heavy, cardiac and orthopedic surgeries, and he becomes our little hero. Unfortunately, our life has been turned upside down, our happiness has become a dream. We are faced with a painful daily life shared between the hospitalization of our child and the management of the two other children who are crying for their lost happiness. Because of their little brother's illness, they became sad in spite of the great Love he carries for us. We sacrificed this happiness to save our little angel, unfortunately everything has a price and health has a double price. Today we find ourselves in total precariousness, we live in a room of 12m2 in an unhealthy house that we share with another family, this place is infested with dangerous insects I spend my nights watching the children so that the giant spiders do not bite them, my sick son has had several infections due to the unhealthy house, which cost him a lot, his only kidney is bad and must undergo emergency surgery on the only kidney he has left. We, the parents, were weakened by our son's health and our social situation, we lost our job and we tried to get back to the surface but we didn't succeed. The health situation of our child is getting worse and worse because of our social and financial instability, we have more strength to continue our fight for our child, the administrative procedures are long in spite of us, our child is suffering from his illness and the social situation is worsening his case. We don't ask for anything but to live in dignity under a clean roof for our little family, we are tired of being thrown out on the street and rehoused in unhealthy and infected places. We just want a roof over our heads for our children so that we can get together again and save our child. Today his vital prognosis is that his only kidney is committed to giving up the doctors fearing the worst. Thank you si much God bless you I beg you to help us.