Support for the Prices and Brighton

Brighton was diagnosed with a mitochondrial disorder called Leigh's Syndrome on October 7, two months before her first birthday. Her condition is progressive and there is no cure.

In the fall, Brighton spent 20 days in the hospital where the initial diagnosis was given. Starting in January of this year, Brighton spent 70 days in the hospital for a variety of complications related to her condition. Brighton has brain lesions that are progressed and necessitated surgery for a trach and a vent, which regulate her breathing. She also had a GJ-tube inserted to regulate her nutrition. While her G tube (feeding tube that goes directly to her stomach) was placed in September, the "J" part of the tube goes directly to her intestines to prevent vomiting. These allow her to get nutrition as her body is not capable of regulating these processes on its own.

This week, a new issue started.... Brighton has dysautonomia related to her Leigh’s Syndrome. Her brain isn’t properly telling her body how to regulate its temperature. This started last week and has only gotten worse. She has red hot spots where her blood vessels are expanded, she has mottled skin, and she has purple cold spots where her blood vessels are constricted.

Josh has been Brighton's main caretaker since her first hospitalization in September and has not been able to work. The family is living off of what savings they had and our first Go Fund Me.

Medical bills plus all of the new supplies and medication that Brighton needs has put the family in an unthinkable situation. Immediate help is needed for them to cover their mortgage.

They are doing everything they can to find help but our medical system has made it difficult. It takes 100 days in the state of Mississippi to get an answer on Medicaid, which puts them at June 22nd so that is the soonest they might see some relief there.

They will still have to get a nursing company to take them on and find nurses. Kelly's private insurance doesn’t cover at-home nursing beyond 3 hours a week and they have been unable to find pediatric nursing in our area because they are "too rural."

They have reached out to their mortgage lender and they do not assist until the account is 61 days in arrears and do not qualify for the COVID assistance.

The family desperately needs our continued help to cover their mortgage until fall to give them time to get nurses in place and allow Josh the time to work again.

We understand the optics of putting this request out on the heels of a beautiful 3-day family vacation to Disney World. That trip was one that had been booked and paid for for a long time and rescheduled several times due to Brighton‘s complications and hospitalizations. It was truly a miracle and a rare opportunity for the family to be able to take that trip.

Can you please help provide support so our loved ones don't have to worry about having a place to live while caring for Brighton?