4 Needs 4 Nathan

​Our precious son Nathan was born with an extremely rare genetic disorder called 49, XXXXY syndrome. It affects 1 in 100,000 boys—that’s only 10 boys out of 1 million. A genetic disorder is a condition in which a child has an abnormality in his/her DNA, and thus is formed, both neurologically and physically, differently than the majority of the population. Because these children are formed in this way, they then can have difficulty functioning in the world like their typically developing peers. In Nathan’s case, his syndrome has caused several other neurological, physical, and cognitive disorders as well. This unfortunate combination of disorders have rendered Nathan unable to speak, eat (he is fed by a feeding tube in his stomach), learn, and interact socially as his typically developing peers, despite continuous therapy and treatment since infancy.

​One of the neurological disorders we have come to learn about is called Sensory Processing Disorder or SPD. Basically explained, SPD simply means that Nathan’s brain interprets all of his 5 senses differently than we do, causing his responses to these sensations to be over-reactive, or under-reactive. As an example, many of Nathan’s struggles with eating are directly tied to the way his brain interprets the sensation of touch. Naturally our brains are wired to accept foods and textures as a positive thing, and those things that are unsafe, or unpleasant, are interpreted as negative, causing us to not eat them. For Nathan, his brain interprets most food, and the action of consuming food, as a negative thing; when food enters his mouth, instead of his brain telling him to chew and swallow, it tells him to gag and get it out of his mouth. This is currently one of the ways it affects Nathan. It has also been shown to affect speech, eating, social interaction, physical stamina, sleep, how a child learns, and how a child can move about in the world. In Nathan’s case, it has a great impact on his other disorders as well.

But thankfully for Nathan, there is hope.

​Nathan has been accepted into a one-of-a-kind, world renowned clinic in Colorado called the STAR clinic that addresses all of these issues with a nurturing understanding of SPD. Nathan will be receiving intensive feeding therapy, occupational therapy (to help him cope with SPD), speech therapy, and social interaction therapy. In addition to several years of research, what sets this clinic apart is that it helps individuals and their caregivers understand how their brains work, and provides the tools needed to overcome these challenges on both a cognitive, and emotional level. Treatment will require us to live in Colorado for two months this year, and we are needing to raise $25,000 dollars to cover his treatment, travel expenses, equipment, and continued therapy afterward. Nathan deserves the chance to succeed in this world, and we need your help to make that happen. Due to the rarity of his syndrome, we do not qualify for any county, state, or federal funding. We are humbly asking for your financial support in this incredible journey, and thank you for your love, and generosity. God bless

Donations ()

  • john clark 
    • $110 
    • 45 mos
  • Rachel Conner 
    • $50 
    • 53 mos
  • Mary Asgill 
    • $100 
    • 54 mos
  • Anonymous 
    • $50 
    • 54 mos
  • Don & Mary Swanson 
    • $100 
    • 54 mos
See all

Organizer

O'Mallie Deplet 
Organizer
Turlock, CA
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