Arwen's Accessible Home & Backyard

I want to introduce to you these sweet friends of mine and their 3 daughters, the Bookhout family. Over the last 5 years, I've watched them grow from a family of 2 to a family of 5 and what makes our relationship even more unique is the fact that I've photographed and captured their memories with every milestone. I always say that their firstborn, Arwen, and I have a birth bond because I was there with Jenny and Dan when Jenny was in labor to the moment Arwen was born. They tell her story better than I can but I wanted to start a fundraiser that would help ease some of the financial burdens as they continue in their goal of making Arwen's world at home accessible. She is a little superhero among us and I can say from every encounter that I've had with her; her joy is contagious.

Here is a message from Jenny & Dan.




We are the Bookhout family. Our firstborn, Arwen, suffered an HIE event (loss of oxygen) at birth due to cord prolapse when she was born on July 11, 2015. She spent 30 days in the NICU, fighting to live and learning to eat. 


Since birth, Arwen has been diagnosed with Cerebral Palsy, Epilepsy and Cortical Vision Impairment. Although I think she’d tell you those are the least interesting things about her. She is a big sister to Zadie & Freya and has two dogs, Bowie and Boudreaux. She adores pulled pork, curry chicken, all things savory and chocolate chip cookies. She hates bright lights because it makes it hard for her to see. She loves spinning, swinging, music and when her Daddy flips her upside down. She loves talking and reading books on her eye gaze device — and telling you “My name is Arwen”.

Arwen loves exercising and exploring the world with her new “robot legs”. That’s the name her little sister Zadie calls Arwen’s Trexo. The Trexo is a motorized exoskeleton that attaches to her gait trainer and with it Arwen is able to walk along any flat surface. The simple act of walking does amazing things for the body and brain! Using the Trexo strengthens her bones, positions her hip bones into socket, aids digestion, builds muscle, increases body awareness, develops depth perception and other visual skills. Having a Trexo at home now, Arwen is able to walk daily! However, going outside is a challenge since homes aren’t usually built with full accessibility in mind. 

One of our biggest desires for Arwen and children with disabilities is for them to be included in the lives and activities of their peers. If Arwen wants to play outside with her sisters and friends, she needs to have environments that are accessible to her. We are working on adapting large portions of our backyard as well as the thresholds to our home so Arwen can be included and enjoy family life both inside and outside. These modifications will not only allow Arwen to navigate easily using her Trexo, but also with all of the other medical devices she relies on, wheelchairs, standers, etc. 

The only way to have full inclusion for people with disabilities is for their daily environments to be accessible, and that starts at home.



*All money raised will go into a Supplemental Needs Trust in Arwen’s name to be used exclusively for her. 

Donations

  • Rita Bay 
    • $300 
    • 1 mo
  • Anonymous 
    • $100 
    • 1 mo
  • Carrie Lacayo-Benton 
    • $25 
    • 1 mo
  • Anonymous 
    • $10 
    • 2 mos
  • Anonymous 
    • $100 
    • 2 mos
See all

Organizer

Dawn Wallace 
Organizer
Saint Augustine, FL
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