Help Nevaeh With A Rare Disorder (Visual Snow)

Please help Nevaeh with a rare disorder have a better quality of life.

 

What is Visual Snow? Visual Snow is a rare condition that only affects 2% of the world's population.

What does Visual Snow look like?

1. Snow-like dots across the entire field of vision 2. Small floating objects and flashing lights, sensitivity to light 3. Continuing to see an image after it is no longer in the field of vision 4. Seeing images in the eyes itself 5. Seeing other visual stimuli such as starburst, halos, and double vision 6. Symptoms cause (screams at night a lot ) lack of sleep, tingling sensations in the legs and arms, dizziness, nausea, and seizures. 


 

Nevaeh was diagnosed with Visual Snow 3 years ago. Nevaeh was treated for a trial treatment in August. This treatment significantly impacted Nevaeh’s condition; although it did not cure her, it did help the condition not to worsen. Nevaeh has started to have seizures  and it seems to have caused her condition to worsen.Nevaeh also had a bad sinus infection .We can only guess these could have played a role in causing condition to worsen.  We are looking for funding to help pay for the treatment again to help gain her life back. Also, for travel, since treatment not in town.


We are also looking for funding for a service Dog for Nevaeh. The pandemic has caused a lot of backup with organizations that can help with service dogs and their policy is very strict with who they help. Since she has a rare disorder, it does not fall under the list of people they serve. We were advised to buy are own dog and hirer a trainer.

 

How would a service dog help her?

A service dog would help with deep pressure, balance, grounding, panic response, tactile, create physical buffer, and most importantly find help for Nevaeh when she needs it.

 

How much is treatment? Treatment is $3,000 not including drive out of town that we would have to make every week a few times a week. VS therapy is something that we know helps Nevaeh and has made a big impact on her life.

 

How much is a service dog? Most  services dogs run anywhere between $ 30,000-40,000 but we have found a better deal these amazing  dog breeders called (Waterloo Doodles) speaking with the lady in charged I fell in love with her support and understanding of our needs. They will do the training and already have some dogs in the process of training it is all here in Austin link below.

https://waterloodoodles.com/?gclid=EAIaIQobChMIzYjp_-WR-AIVpAiICR1RigGVEAAYASAAEgIEU_D_BwE

The service dog will help Nevaeh with anxiety, depression, feelings of detached to yourself or others, comfort at night from the nightmares, balance, help be a constant weighted blanket, seizures, and vision. The service dog will go to school with Nevaeh. Nevaeh wants to name her dog Abba which means God. She said. “ I will call Abba and every time I will know God has and will heal me.” 


 

 

Medical Expenses : Our insurance (BrightHealth) does not have a neurologist anywhere near us. Apparently they are new and did not set up the insurance well. This has been hard on us because we are having to pay out of pocket. We are having to pay hospital bills. We also have to pay  doctors appointments all out of pocket and up front.   So far our bills are up to $2,000 out of pocket  but there is way more coming because we still have the hospital bills. Most importantly we need to get Nevaeh an eeg done asp. Nevaeh was been having seizures and we need to get this taken care of asp. We will have to pay upfront the cost of the eeg. This could be anywhere between $700-3000. 


We really appreciate your prays for our little girl Nevaeh. One thing is for sure she loves God and she is a fighter. 

Thank you for your blessings.