Support Ashley's Healing Journey

ASHLEY'S JOURNEY

Written by her mother Laura Gibbons

On Sept 21, 2023 our lives changed forever. Ashley had her first stroke. For still unknown reasons, the hospital didn’t diagnose her stroke until 13 hours later. Ashley was then air lifted to Duke and underwent her first surgery while Luke and I were on our way to Duke. She did well most deficits were resolved, thank you Lord. Because there was no clot the stroke team was unsure why she had a stroke. She stayed in Duke from just after midnight on Sept. 22 until 7 p.m. Sept. 26.

She was discharged with many restrictions, as the doctors were unsure if she had a carotid dissection. On Nov. 18, we noticed Ashley was moving slower than she had, and was holding on things to walk. She wasn’t any better after a few hours, so I took her to Duke because something still seemed “off.”

They did a scan and she was having another stroke. This one was much much worse. Her stroke symptoms were right side the same as the first stroke, but she continued to worsen where she wasn’t responding to pain on her right side, couldn’t lift her arm or use her leg. More scans were done and she was diagnosed with Moya Moya a disease, a rare neurodegenerative disease that causes a blockage in the carotid arteries of the brain. There is no curative treatment for Moya Moya disease, medical and surgical treatments are focused on improving cerebral blood flow. The doctors determined her symptoms were “pressure dependent” meaning her normally low blood pressure wasn’t providing the brain perfusion she needed.

She was admitted to the Neuro ICU and was given “pressors” to increase her B/P. Besides a bad headache, she didn’t have any other side effects from the meds she was receiving. Her stroke symptoms improved, but were still there. After much discussion and many medical team meetings, the decision was made for Dr. Cutler and Dr. Zomorodi to perform a direct and indirect bypass (branch of the left STA (superficial temporal artery) to MCA (middle cerebral artery) and indirect bypass (branch of the left STA is placed in contact with the brain surface) to encourage collateral vessel growth to supply the brain with blood flow).

On Nov. 28, Ashley underwent a 7-hour surgery for the direct and indirect bypass. She was still very weak on her right side and was unable to hold her right arm up, unable to hold anything and unable to walk. She was receiving Physical, Speech and Occupational therapies until she was discharged from Duke and transferred to Wake Med Inpatient Rehab center on Dec. 6.

She is tough and was determined to get home “before Santa Clause comes.” She worked hard every day and was discharged home on Dec. 22. She was using a walker and shower bench during that first month. She was still getting PT and speech therapy.

By Feb. 12, she was stable enough to walk with a cane and she stood up to take a shower all by herself! She was so happy! She was doing much better but still wasn’t where she was, even after the first stroke. The CT perfusion scan was done on April 22. It showed the bypass was working, but not enough blood flow was getting to where her brain needs it. So, the neurosurgeon increased the med she was on to increase her B/P (we came home in Dec with a medicine to help increase her B/P while the bypasses healed). So, we did that and had an MRI in 2 weeks.

On May 15, she had the MRI which showed no change. He doubled the dose in her B/P med as “some people’s bodies fight the med.” On May 29, she had her last MRI which showed not a significant amount of change. I had a meeting with Dr. Cutler and Dr. Zomorodi and we decided to change medicines to 2 different meds. These were more dangerous to the body, but would increase her B/P. We also discussed hyperbaric treatment to help with the neovascularization (formation of new blood vessels) that has been shown in studies to help people with Moya Moya disease. On June 6, we met with the hyperbaric center at Duke. Ashley was excited to start therapy and wear her "astronaut helmet."

Unfortunately, due to Moya Moya being a rare disease, hyperbaric therapy is not an approved treatment, so insurance won't cover it.

After contacting an outside agency for treatment (their medical director wouldn't approve an off-label use), I wasn't sure what we would do. They recommended a place in Fayetteville that does hyperbaric therapy with off-label diagnoses.

Ashley has a consult with them on June 19. The treatment there is $500 per treatment. What Duke recommends is 2.5 hours per treatment for 40-60 treatments.

Her left side is severely stenotic (closed up) and her right side is moderate to severe. The doctors won't do any surgical treatments on the right side before the left side is stabilized.

At this time, Ashley has good days and not so good days. She walks with a limp, dragging her right foot. Her right arm hangs limp, although she can use it when she wants to. Her speech is frustrating to her at times. She will say half a sentence and get "stuck" 3-4 times, then gets the whole sentence out. This past weekend, she wanted to swim with Luke and Ola Mae, and jumped in the pool, hurting her leg, so she got out and didn't get back in.

I just pray God will continue bless her and heal her. My hope is she has a good quality of life without pain. She is a tough young lady and brightens everyone she comes in contact with. All prayers are appreciated.

Thank you for your generosity and support: All donations will go toward the hyperbaric treatments ($500 per treatment, 40-60 times).