The following are the basic lifeline equipment that we help provide to children with SMA. Your donations help ensure that child with SMA have a fighting chance.
Educating the family on any new advancement to extend and assist with an SMA child.
By providing a network of families bonded together by the same story.
One of the biggest obstacles in keeping an SMA child healthy is removing the secretions from their lungs. SMA children lack the appropriate lung strength to adequately cough. This inability leaves SMA children vulnerable to respiratory infections caused by secretion lingering in the lungs and could cause potentially fatal pneumonia. A suction machine is affective in removing secretions from the mouth and upper trachea but the most dangerous secretion is the ones that cannot be seen. These secretions are in the lungs and need to be removed. The most effective way to remove these secretions is by using a cough assist. A cough assist is a noninvasive therapy that simulates a cough by applying a swift breath with positive pressure and then removing that breath with negative pressure. Cough Assist can be used with a face mask or with an adapter to a patient's tracheostomy tube.
SMA children can eventually lose the ability to swallow, especially Type 1's. This inability also carries the danger for choking on their saliva. The best way to combat this is a suction machine. Portable suction machines are convenient and should always be nearby. It is extremely important to have and it must ALWAYS travel with your SMA child anywhere they go. Suction machines operate just like a vacuum by removing secretions from the mouth and upper trachea. There are lots of different suction machines but all operate similarly with a suction unit, canister, filters, tubing and catheters.
Imagine that your lungs are like a balloon. Overtime a balloon will deflate just as the lungs will if they are not expanded with a deep breath. A noninvasive Bipap ventilator has become a standard of care for children with SMA. BiPAP (bi-level positive airway pressure) is a breathing apparatus that helps SMA children get more air into his or her lungs. Bipap uses variable levels of air pressure providing breathing support during sleep or as needed.
Prior to completing a cough assist treatment it is important to try and dislodge secretions from the walls of the lungs. This secretion can build up because of an SMA child's inability to properly cough. The most effective way to break up those secretions is through the use of a percussion vest. The Vest™ is a therapy system that is designed to break up pulmonary secretions through high frequency chest wall vibrations.The rapid chest movement mimics ‘mini-coughs’ that dislodge and thin the mucus, moving it along to the central airways.
Having a child with SMA presents certain fears of the unknown. For example, how much oxygen is he or she receiving? A pulse oximeter is the instrument used to answer this question along with providing much insight to an SMA child. Elevated heart rate can be a good indicator of excitement, pain, frustration and much more. Likewise, a decline in heart rate could be an indicator of a serious problem. A parent knows their child's body language and can sometimes gauge certain problems but what about at night when the child and parents are sleeping. A pulse oximeter should always be worn by an SMA child especially at night when the body naturally slows its heart rate and oxygen levels are susceptible to declining. Pulse oximeter is a non-invasive way to monitor a child's oxygen saturation and heart rate by placing a sensor is placed on a child body usually a finger or toe. They are equipped with an alarm that sounds any time the heart rate increases or decreases into a dangerous level. The same occurs if the oxygen levels decline into the danger level.