Lifting Esra with Love

$30,000 goal

Campaign created 27 days ago
Created November 21, 2018
Esra's Trust
Esra Edwards is a 12 year old girl who has a rare genetic disorder that is named after her. She is the only one in the medical literature identified to have what is now called the Double E Deletion. She is profoundly delayed and highly dependent.  She has a cluster of birth defects including Spina Bifida that are severe. Esra requires the aide of a wheelchair as well as a feeding tube, cecostomy for bowel managment, VP Shunt for hydrocephalus, orthotics, and metrofinoff (bladder management).  She is sensory seeking, apraxic (reading, writing, drawing are not her thing), echolaic (insistent and repetitive questions and statements), and highly distractable.

She has a bright and friendly demeanor with a genuine love for her family and friends. Her smile is almost constant as she seems to have an angelic gift for positivity and enthusiasm for the now.

Esra lives with her parents and younger sister and brother. Three years ago, she said goodbye to her terminally ill baby sister who was only a few hours old. Esra still asks if her baby sister is in her mommy's tummy.

Her family has moved five times with the military. Esra's constant challenges and needs require a highly-skilled, comprehensive team. Her family uses Tricare Select in order to have the most flexibility with providers. That makes for burdensome travel costs especially when she has long inpatient stays. Thanks to the travel assistance of Angel Flight Northeast, she is able to keep her care at Boston Children's Hospital even though her family is stationed elsewhere.

The top five priorities for fundraising are:

1) $2000 for Caregiving Expenses: Esra has an upcoming surgery to revise a previous surgical wound that is not healing and remove hardware that is harboring infection. We are being told she could be inpatient for a week if all goes well and over a month if things do not go well.  We will need help with caregiving and housekeeping costs as her mother accompanies her to Boston and her husband and other children remain in Washington DC.

2) $5000 for a Ceiling Track Lift System: Esra has had a growth spurt recently and caregiving for her now requires heavy lifting.  The family needs help to install a ceiling track lift system to eliminate the strain of constant lifting.  However, the system is not completely covered by military insurance.  

3) $3000 for an Accessible Kitchen Sink: The military-provided ADA home is not completely accessible making independent living and learning a challenge for Esra.  She cannot reach the kitchen sink and is losing out on valuable opportunities to participate in the household rhythms of cleaning and serving.  This estimate is for the sink and labor.

4) $5000 for an Accessible Bicycle: We would love to enjoy the outdoors together as a family.  We have found a wonderful tricycle that would provide her the support she needs and also give us the option to disconnect her wheeled seat at our destination and let her enjoy where we are with us all.

5) $15000 for Van Modification: Our family has grown out of our mini-van.  We recently purchased a diesel passenger van in hopes to pull an accessible RV (which we have yet to find one that fits our needs).  The diesel van needs to be modified so Esra can be transported safely.  Once we have the Diesel van modified , we will be able to sell our current mini-van and we will put those funds into modifying an RV for Esra's needs.
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$30,000 goal

Campaign created 27 days ago
Created November 21, 2018
Esra's Trust
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