Palm of Hope
Palm of Hope is a small group of volunteers united by one goal - supporting kids with life-threatening or incurable diseases in Russia, Belarus, Ukraine, and Kazakhstan.
We fundraise to assist children with essential nutrition supplies and critical medical equipment. Any donation will forward us in the daily battle giving children a hope for tomorrow.
Why we are here
We are here because no matter how little time the child may have left, there’s still much we can do to help.
We are here because we truly believe that despite diagnosis, with help of advanced equipment and medical supplies, these children can live comfortable life at home with their families.
We are here because the countries that we cover are not fully developed to provide sufficient medical and social care. Many of our patients simply cannot survive without our support.
By supporting our foundation you will help us to purchase and ship equipment and supplies in timely manner.
Most of our children have rare genetic diseases like Spinal Muscular Atrophy (SMA), Duchenne muscular dystrophy and others. These uncommon neuromuscular pathologies cause damage to movement functions, progressive muscle wasting, cardiac function disorders and labored breathing functions.
How do such children live?
It all starts from the legs. The disease gradually moves up through the whole body. Then respiratory muscles stop working and the child is eventually supported by ALV (artificial lung ventilation). If the parents can afford highly expensive "house/portable" ALV, then it all ends with cardiac arrest at home but at least in the loving atmosphere. Alternatively - in an emergency room, sometimes all alone and full of fear. Without everyday massage of contractures the body becomes stiff. Any wind, rain and infection pose a lethal risk to a child.
Hence, further complex medical materials are required throughout illness progression (such as special nutrition (expensive formula only available from foreign suppliers), special mattress/pillows to prevent bedsores, catheters, pressure gauges, feeding tubes, pulse oximeters, tapes, ventilator's equipment and supplies, diapers and other hygiene items, watertherapy supplies, devices that support and align the foot (orthotics), wheelchairs, standers, corsets) + around the clock nursing and care.
Please see below in more details the essentials we are looking to buy with your funds:
Our children require special nutrition ("gastrointestinal" - please see below few examples) not being able to process the food on their own. These special liquid supplements are expensive and needed to be bought abroad as there are no quality substitute currently available in the countries that we cover.
- Specialized infant formula
- Specialized toddler formula
- Specialized addition to the diet (e.g. proteins, thickeners, digestive aids, etc.)
- Feeding pump
Medical Equipment/Nursing Costs
Our children require constant AVL and other special care equipment (such as cough assist, suction machine, pulse-ox, plus all listed before/above). Some children are wheelchair users and most of them require regular rehabilitation medical services.
With no state support for palliative care, we are not succeeding much with local fundraising. Neither these children are “eligible” for local hospices’ support services given their “not short enough lifespan”. The state doesn't even cover one quarter of monthly needs with petty benefits and pensions. Hence left entirely to their parents to provide around the clock nursing care. There are no funds for education of the necessary medical specialists either. The state doesn't pay for the equipment allowing the children and parents to stay home instead of emergency room. The rare instance of medical equipment available free-of-charge in the hospitals are most of the time unsuitable for such children because according to the parents "they are suitable only for tortures", not for children with such pathologies. Therefore all the necessary things come at parent's own expense and they all should be produced by foreign manufacturers.
About 40% of our families have many children and half of them have only one supporter (usually their mothers). Most of these women live on benefits that are enough only for basic survival. They have no money to buy clothes, personal hygiene product, medical drugs, consumables for artificial lung ventilators, good quality orthopedic devices and other products. Child's disease and the necessity to stay beside him/her all the time limit the possibility of professional growth and self-development of the parents. These real-world circumstances lead to gradual emotional and physical burnout which is extremely undesirable for both - parents and their closest relatives.
Equipment include but not limited to following
- Bipap for non-invasive ventilation
- Suction machine to clear airways
- Cough assist to immitate cough in patients with profound muscle weakness
- The Vest airway clearance system
- Humidifiers for invasive and non-invasive ventilators
- Oxygen concentrator
- Medical Air Compressor
- Specialized stroller
- Manual wheelchair
- Power wheelchair
- Specialized indoor sitting and positioning system
- Head support
- Positioning wedge
- Bath chair
- Dynamic corset
Alternative communication equipment:
- Basic communicator
- Communication software
- Computerized communication devices
- Ventilator supplies
- Bipap supplies
- Oxygen supplies
- Tracheostomy care supplies
- Enternal feeding supplies
- Specialized skin care supplies
- Medical humidifier supplies