Speech, Language, Feeding & Augmentative Communication

Speech, Language, Feeding & Augmentative Communication

Nathan’s Dream Bedroom by Special Spaces of the Triangle

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Nathan has been selected as the newest recipient of a bedroom makeover from Special Spaces of the Triangle!

Special Spaces of the Triangle is a local chapter of a nonprofit that creates dream bedrooms for children with life threatening illnesses.  They will be redoing Nathan’s room on March 28th and need your help.

Nathan is a two year old little boy from Louisburg, NC who has Spinal Muscular Atrophy or SMA, Type 1.  SMA is a degenerative muscular disease that prohibits Nathan from being able to roll, sit, stand, move his limbs or speak. Eventually, Nathan will lose the ability to swallow and breathe as this disease affects all of his muscles.

Nathan’s journey began eight years ago, long before he was born, with the birth of his sister Jocelyn.  It was then that Nathan’s parents learned they were both carriers of the gene for SMA and that Jocelyn was affected.  1 in 37 people are carriers of the SMA gene and it takes two carriers to have an affected child. Nathan’s parents were told that their daughter would not live to her second birthday. They saw a genetic counselor and were advised that every child they had would have the potential to be impacted by SMA.  Jocelyn passed away at age 4 ½.

Since Jocelyn’s passing, the family has grown to include Trey who is now 4, Nathan who is now 2, and Asher who is 3 months old.  Though Trey and Asher are unaffected by SMA, Nathan’s parents received the news that he had SMA when he was 6 weeks old.

Despite being non-verbal, Nathan is able to communicate his likes and dislikes to his parents in other ways.  His eyes light up as he holds his baby brother, or as his big brother holds his hand. Nathan is completely aware of people and his surroundings, and has the likes and wants of the average 2 year old. He just has to do things very differently and with a lot of help.

Special Spaces of the Triangle will be building a custom bed and space for Nathan in his parent’s master bedroom, close to their watchful eyes. In addition, we will be creating a colorful play/therapy space with special accommodations for Nathan that is also appropriate for his two brothers to play and learn together.

Special Spaces of the Triangle creates dream bedrooms for children with life threatening illnesses: a place that only the child can imagine and a place to go when battling a serious illness offering both peace and comfort.  We complete the entire makeover in just one day and we are 100% volunteer and donation based.  For more information please go to www.facebook.com/specialspacesofthetriangle.

We need your help to turn Nathan’s room into a place of comfort and security.  Our goal is to complete the makeover on March 28th, so please donate today to help make Nathan’s life a little brighter.   Thank you for taking the time to hear Nathan’s story.

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