Ayaa's Healing Journey: Guillain-Barre Syndrome

My name is Becky Arnett, and I am raising funds to support my stepdaughter Ayaa McDaniels, and her parents, Mattie McDaniels and Ashley Brookens, as they navigate Ayaa's recent diagnosis of and recovery from Guillain-Barre syndrome.

Around May 11, 2022, Ayaa began having nerve pain in her back. Within 48 hours this pain quickly escalated and began affecting her ability to walk, sleep, or even eat. Her parents got her to the local hospital and after many tests it was determined she would be airlifted to Oakland Children’s hospital. There she was diagnosed with Guillain-Barré syndrome. Ayaa is a vibrant 18 year old. When diagnosed, high school graduation was weeks away. She also holds two jobs locally in Sonoma County. Unfortunately she will be missing graduation and was in the hospital for her 18th birthday.

Guillain-Barre syndrome is a rare disease affecting the myelin sheath of the nerves. It progresses quickly and is extremely debilitating physically and in Ayaa's case, immensely painful. There is a phase of paralyzation and most patients have to relearn to walk. She will recover, but it is unknown the amount of months of rehabilitation it could take at this time.

Many caring doctors and nurses, first in the PICU, and now in the physical rehabilitation center of Oakland Children's hospital, have been getting her the absolute best treatment possible and we are so grateful. Mattie and Ashley both immediately went to Oakland and have been with Ayaa day and night. So far in her recovery Ayaa has absolutely needed at least one parent by her side at all times, to support her pain management, advocate for her, and support her mental wellness in this extremely difficult time. On May 17th she was admitted to the hospital, and it is known she will need inpatient rehabilitation for at least a month, likely more, once she is able to start this process.

Ayaa has good medical coverage and at this time her parents are not expecting drastic medical bills. Ayaa's helicopter ride may not be covered by her medical insurance, and her parents aren't sure of the cost of that bill. Of course, other expenses such as gas, lodging, and food as they both travel to be with Ayaa in Oakland are mounting even after just 13 days. Mattie and Ashley have both had to drastically reduce their work hours, and are looking at possibly taking medical family leave. Both of these scenarios will likely result in lost wages, potentially for months. With one parent living an hour away and the other about four hours away there has been and will be a lot of driving back and forth over an unknown period of time. Mattie and Ashley both each have two other children needing their care, so travel back and forth from hospital to home is essential.

There are so many unknowns at this point so early in Ayaa’s journey of healing. Ayaa is staying positive and working hard to get better, she’s amazing !! It is estimated that recovery takes at least a month, best case scenario, and that is after she is out of the acute pain phase she is currently in.

I am humbly asking for support for her parents as they navigate this extremely difficult time. With these funds, worry about sleeping well, eating healthily, and having gas money to be with their daughter can be alleviated. Also, it can help to provide anything extra that can brighten Ayaa's days. And lastly it can relieve the financial stress of any lost wages during this time.

Thankyou for taking the time to consider my request. We encourage you to share widely. Any small amount is so appreciated!