Move on up, Rayn!

My niece, Rayn, (the cutest little giggle girl ever!) is aging out of her current specialized schooling program. Despite the additional special needs she has due to medical conditions, the Colorado School for the Deaf and Blind has agreed to work with her in the fall. This is a major turning point for her, one that her family can't afford to miss, but can't afford to make happen either. We are asking for your support in making it possible for their family to move within range of this specialized school. 

Rayn has rare and major medical conditions which have blinded her and caused a myriad of developmental issues. The rarest of these conditions is F.E.V.R. or Familial Exudative Vitreo-Retinopathy which causes abnormal blood vessels in the eye to rupture and bleed out. These ruptured vessels have caused retinal detachment in both eyes as well as cataracts necessitating several eye surgeries.

The second rare condition is O.N.H. or Optic Nerve Hypoplasia. This condition has several associated affectations all of which Rayn experiences to a high degree. In addition to the malformation of the optic nerve, ONH affects hormonal and regulatory systems. Rayn’s pituitary gland, which controls all hormones, does not function causing growth hormone deficiency, diabetes insipidus, adrenal insufficiencies, and hypothyroidism which can affect mental capacities. Also, her hypothalamus gland which controls the body’s regulatory systems does not function correctly. To help compensate, Rayn has hormone replacement therapy. Even so, she cannot regulate her own body temperature, readily determine when she is hungry, regulate water retention and thus sodium levels and urination, or maintain regular sleep cycles sleeping only 4-5 hours in a 24 hour period on average. Additionally, Rayn experiences Sensory Processing Disorder.

The third condition is Hydrocephalus which causes the fluid in the brain not to absorb correctly creating an arachnoid cyst. Before the placement of a VP shunt, the cyst covered sixty percent of her brain area causing damage and seizures. The cyst is now only five percent of her brain area and we are seeing development of brain tissue where the fluid had been. (yay!)

In spite of all the medical problems and hospitalizations, Rayn is quite a strong and happy little girl. She brings joy and relief through fits of giggles with incredible dimples framing her smile.

As you can imagine, it has been very difficult for her family to manage and coordinate Rayn’s care, field the emotional and physical stressors, and maintain their household.

We ask for your prayers and for your help in fundraising efforts to help her family move to Colorado Springs so she can attend the Colorado School for the Deaf and Blind. 

Thank you so much for your support and encouragement.


God bless you and yours,

Tonya
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Organizer

Tonya Pewless-Rigs 
Organizer
Blackwood, NJ
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