Therapy tub for Easton


22416578_1500693770.6368_funddescriptionMy son Easton was diagnosed with spinal muscular atrophy(SMA) type 1 at 6 months old in 2007. SMA is a neuromuscular disease and type 1 is the most severely affected. SMA  affects muscles that are used for crawling, walking, sitting , swallowing and breathing. Easton has a bipap ventilator(similar to CPAP) to support his breathing when he sleeps and when he is sick.  and is exclusively fed through a gtube to meet all his nutritional needs because his swallow is too weak for him to eat by mouth. Because Easton does not have the muscle strength  to produce a strong cough, even a simple cold can turn very serious for him and could even take his life so we have to take many precautions going to public places and around crowds so we don't unnecessarily expose him to illness.  Since the day Easton was diagnosed with SMA, I've been on a mission to find a cure and/or treatment for him, spending many nights, researching all night long to find anything that would help him.  That wonderful, memorable day of December 23, 2016, the FDA approved Spinraza, the first treatment ever available for SMA. I shed tears of joy, a release of all the build-up emotion  in my heart and soul, and am thrilled for the entire SMA community of families  who have been waiting for this treatment. In order to maintain what little strength a child with SMA has,  one of the most crucial parts of care, besides nutrition and respiratory care, is physical and occupational therapy. Aqua therapy is one of the best form of physical therapy for Easton, because while he cannot move freely outside the water, the buoyancy of the water has an anti-gravity effect, making him nearly weightless, and allowing him to move easier completely on his own.  In this weightless enviroment, with the freedom to move, Easton can more easily stretch his muscles, increase his range of motion, and strength, and and even breathe easier. Warm water, particularly, also helps with circulation and cardiovascular health.  Now that Easton is recieving Spinraza treatments that will stop the progression of his disease and potentially give him more strength, aqua therapy is more important than ever.  I have done water therapy with Easton for many years, but this requires the time  and effort to visit another location, outside of our home, to do therapy.  Also because of seasonal changes, weather does not always accommodate water therapy, and taking Easton to any public pool for water therapy puts his health at risk by exposing him to germs. Since aqua therapy is the easiest form for Easton to independently move his muscles, this is an activity we would like to perform every day, to give him the best opportunity to see the most improvement from this wonderful treatment. If we had a therapy tub at our home, we would finally be able to do aqua therapy as often as possible, without exposing Easton to temperature extremes and potential illness.  Easton loves the water and I am thrilled when I see how happy he is to move his body on his own. Imagine having, for the first time ever, the ability to move your arms and legs without support, wiggle your torso, and move your head back and forth. Outside the water, those movements are impossible for Easton, but in the water, he is finally free.  Easton  is a bright, charming, smart 10- year-old boy who is out to conquer the world. Thank you for reading our story.  If you feel led to help us with funding toward a therapy tub for Easton, in whatever amount is comfortable for you, you are helping us ensure he sees optimal improvement from Spinraza, and we would be extremely grateful.    I hope you enjoyed our story and thank you for reading.

Katie Nichols, Easton's mom

22416578_1500587683.0489_funddescription

Donations ()

  • Pamela Mead 
    • $30 
    • 30 mos
  • Pamela Mead 
    • $30 
    • 31 mos
  • Debra Mead 
    • $100 
    • 31 mos
  • Michele Brooks 
    • $50 
    • 31 mos
  • Peggie Thornton  
    • $100 
    • 31 mos
See all

Organizer

Katie Nichols 
Organizer
Atascadero, CA
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