The organization forms a strong community of families that provides resilience, stability, joy, and a sense of “equality among equals.”
The organization offers a variety of activities across different areas, which until now, had little to no tailored support for these families.
The organization focuses on acting in areas that require high-level intervention and where the benefits for families are substantial.
As the families express it: this organization is truly a “healing for the soul” that never existed before.
Those who know, know. Because only those walking the same journey truly understand their partner’s heart and can, in turn, give strength to themselves and their peers. These are a “language” and “codes” that only those who have experienced them can understand.
One of the basic needs of parents with ventilated children is the ability to leave the house for important events, celebrations, or even essential moments of respite. They will do so only with the assurance that their child is entrusted to capable and professional hands that will provide the best possible care.
To meet this need, we have established a nationwide network of volunteers who have undergone professional training and gained extensive experience in caring for these children. These volunteers offer their support through regular weekly shifts or one-time assistance.
Additionally, these families have a significant need for tailored opportunities for recreation that suit their circumstances. To address this, we organize summer vacations and special weekend retreats—whether for couples or families—that also cater to the needs of the ventilated individual.
This effort involves a complex logistical operation, with meticulous planning down to the smallest and most essential details. By God’s grace, these initiatives have proven to be highly successful, far exceeding expectations.
At our organization, we believe in mutual support among group members. Therefore, we conduct parent visits in hospitals to accompany families right from the beginning of their journey.
Additionally, we connect parents within the group who are interested and share similar circumstances—whether in terms of medical diagnosis or family situation—for guidance and mutual support based on their personal experiences.
The issue of ventilated patients living at home has been legally regulated in Israel only in the past two decades. As a result, many details are still not defined by law and are sometimes not recognized by government bodies as essential needs.
Therefore, the need arose to collect data from families and map out the needs according to priority. Based on this, we are working efficiently and strategically to highlight these needs to various government ministries and to promote rights for the benefit of ventilated patients, through advocates, lawyers, and top experts.
Since the respiratory field is unique and there are few doctors, activists, organizations, and associations working in this area, the support provided to families is limited. As a group, we have the ability to gather and accumulate information and practices acquired from the families’ experiences and compile all the information in an organized and accessible manner.
The early versions of ventilators were built in the style of the “iron lung,” a non-invasive respiratory device made from a large metal cylinder into which the patient is placed, with their head protruding outside the cylinder. This device was mainly used to treat polio patients, including the “Drinker respirator” developed in 1928.
How does the machine work? A large piston at the end of the cylinder is pulled outward, creating a vacuum inside the machine, which causes the chest to expand and inhale air.
