Happy Wednesday!

I just have to say, I am really enjoying learning about different warriors from around the world and hope you are too! Everyone has a unique journey but there are things in each story I have found relatable, which brings us closer together as a community and as people. Looking forward to learning more! I would love to share more stories about other warriors but also therapists, adaptive clothing brands etc. so send me a message if interested in sharing yours!

Without further adieu, I’d like to introduce this week’s warrior!

Meet Ashley

Ashley is a young woman from Tennessee and the start to her story is quite remarkable! Ashley was born at 20 weeks gestation (24 weeks is considered viable) and was considered to be the smallest and youngest baby to survive, weighing only 13 oz. She was so early her eyes were fused shut, her ears were not developed and they could not tell she was a girl. She was given a 0% chance of survival and her family, including her 16 year old mother, was told to say their goodbyes. Ashley was then placed on a metal table and everyone assumed the worst, until they could hear soft whimpering sounds coming from her tiny body. The doctor was astonished that she survived. Ashley was a fighter and her mother made the decision to give up custody of her to Ashley’s grandparents in order to give her the best chance. A sacrifice Ashley feels ultimately saved her.

Ashley’s family told the medical team to do whatever they had to do to keep her alive, a decision that doctors did not agree with. Her family was told many times that what they were doing was inhuman and cruel, but they did not give up hope. Ashley’s family was strong, refused to back down and fought back.

The months in the NICU were not easy. Ashley was on a ventilator for so long the roof of her mouth grew around it and left scars she has today. She had multiple seizures a day and two grade 4 brain bleeds. She was under a heat lamp and encased within a plastic “dome” that looked like Saran Wrap. Ashley’s nerves were so sensitive that visitors had to whisper, as loud noises would set off her alarms. Ashley’s family was told she would never walk, talk or be “normal” and would live in a vegetative state. Ashley did not agree and pulled out her own breathing tube the day before a tracheostomy was to be performed. At six months old, she was home with no medical devices whatsoever!

Ashley has Cerebral Palsy as well as the autoimmune disease called Graves’ disease. She has Epilepsy and does not have peripheral vision (can not see to the side or down unless she turns her head). Due to this, she can not drive. She is a manual wheelchair user but also uses canes for short distances. Ashley has had many surgeries over the years including a g-tube placed, eye and leg surgeries and femoral osteotomy on both hips. She also had Selective Dorsal Rhizotomy (SDR) with Dr. Park in St. Louis at 3 years old. She says this surgery was life changing for her.

Of course Ashley is WAY MORE than her birth story and her diagnoses! She is a 22 year old who graduated high school with honours and is now pursing a Bachelor’s of Science in writing and interactive media. She always knew she wanted to be a writer and share her story and experiences so she created Ashley’s Vantage, a lifestyle and travel blog. She hopes this will help others with a disability not feel alone, but also caregivers and parents.

Ashley has many goals and dreams that she is working towards. Growing up she was always taught that despite her disability, she could do anything she set her mind to. After getting to know Ashley, I truly believe she will certainly accomplish whatever she hopes to!

Thanks you Ashley for sharing your story! If you wish to follow her journey, find her at Instagram at @ashleysvantage.