When parents first hear the news of their child's SMA diagnosis, doctors often cite this devastatic statistic: "Most children with SMA type 1 don't live past the age of two. " Thanks to breakthroughs in treatment for newborns with SMA, this tide is beginning to turn. Nevertheless, no SMA family takes a 2nd birthday for granted.
For Max's second birthday (on August 1), we have the opportunity to give him two amazing gifts:
- a power wheelchair, which will give him a new level of independent mobility at home and outside the house, and
- an eyegaze device, which will enable him to communicate with others at a level appropriate to his above average cognitive abilities.
Max's condition prevents him from sitting up independently, much less moving from place to place. A power wheelchair will can change that by supporting Max in comfortable positions while enabling him to choose where he wants to go, steering by means of an adaptive joystick or switch.
SMA has also had a profoundly disabling effect on Max's ability to speak, as muscle weakness in his jaw prevents him from being able to close his lips to form consonant sounds. In spite of this, Max is highly expressive, and his speech therapists tell us that he is extremely bright. Each day he chatters away, and while it is easy to understand him when he is repeating words, phrases and sentences back to you, his attempts to speak longer phrases or sentences lead quickly to elaborate yes/no guessing games. An eyegaze device will allow Max to speak his mind, thoughts, and wishes in his own voice to his friends, family, teachers, and caregivers.
While the expense for these two devices is considerable, for Max they are probably the two most important devices for empowerment and maturity for the rest of his life. For individuals with Max's diagnosis who live into their teens and 20s, power wheelchairs and alternative assistive communication (AAC) devices become the primary means through which they interact with the world.
Will you join with us in celebrating Max's two years of life by contributing $2, $22, or $222 to help us buy Max a power wheelchair and eyegaze device?
For details and to donate, click here:
Here is a video showing how a Permobil power wheelchair gives one of Max's friends, Nora, the gift of independent mobility: https://youtu.be/in-JqkiVPXo
To see Max using a (loaner) eyegaze device: https://youtu.be/GM-utcIsE7k