When she sleeps, death comes - a ventilator keeps her alive. We beg for help!
Respiratory stimulator implantation surgery
Ends at: 28 June 2021
Every fallen asleep of Juliet is a deadly danger! Our life is a 24-hour vigil with our daughter and a constant struggle for breath - to maintain good saturation and pulse rate. Julka was born with perinatal hypoxia and lack of breath. She spent almost a year in hospital before doctors diagnosed a genetic disease - Ondine's curse - a syndrome of congenital central hypoventilation that causes Julia to stop breathing when she falls asleep!
While she sleeps, a ventilator keeps her alive. Unfortunately, this is not the end of worry, Juleczka sees very little because of the optic nerve atrophy and damage to the visual cortex of the brain. She doesn't speak yet, she has deep feeling disorders, muscle tension and problems with visual and auditory coordination and eating. Its development is inconsistent and delayed in relation to its peers.
In order for Julia to breathe and function normally, a costly surgery is needed to implant a diaphragm nerve stimulator - a system that will allow artificial respiration and relieve us, the parents, from the fear that our daughter will die.
At night, we are on alert for a change, we cannot trust an electric device, because if it fails, we will find our child dead in the morning. We have to be with her when she sleeps, listen to every breath. Julia needs a guardian angel full-time or an operation to save her from the consequences of this terrible illness. The children who suffer from it forget to breathe even while watching TV. It is difficult for a healthy person to imagine how one can forget about something that happens unconditionally. For Julia, breathing is a process that can stop at any time. Each of her falls asleep is a constant struggle for her breath and life to maintain good saturation and pulse rate. Julia unwittingly detaches herself from the ventilator in her sleep, so we have to watch her overnight, otherwise she will suffer from hypoxia and consequently death... This disease is nowadays considered incurable and so far no cure has been invented for it.
Breathing is not the only problem for Julia, because our daughter is systematically losing her sight. The doctors found that the optic nerve was atrophied. We also have to fight for this, because otherwise Julia will be possessed by darkness outside her breathlessness.
Tracheotomy tube inhibits development and does not allow Julia to speak. For 19 months we have not heard our daughter, we are afraid that she will fall asleep and we will never see her again. Living with such a stigma is extremely terrible and hard. The only solution to this situation is to implant a special breathing stimulator! We ask for help, without which this story can end very badly.
Despite all the illnesses, Julka is a cheerful and smiling child, bravely endures daily exercises with therapists. Julia loves to play with her older sister, play the piano, cymbals and watch fairy tales. In order to be able to breathe efficiently and function normally, a costly surgery of implanting a nerve stimulator of the diaphragm is necessary. If we don't do it now, one day it may be too late. We are asking for your help.