Lifting Esra with Love

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 or EE Deletion.  

She lives on a military base in a Washington DC with her active duty father, her mother and and two younger siblings.

She is profoundly delayed and highly dependent.  She has a cluster of birth defects including Spina Bifida that are severe.

Esra uses a wheelchair and needs aides for eating, drinking, bladder and bowel management and neurological function.   She is sensory seeking, has no interest in reading, writing or drawing, speaks in repetitive questions and commands, is highly distractable and has a hard time negotiating elevation changes. 

Her challenges are overcome by her bright and friendly demeanor.  She has a genuine love for all she meets.  Her smile is almost constant as she seems to have an angelic gift for positivity and enthusiasm for the now.  However, she has a hard time comprehending.   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 Coast Guard.  Esra's constant challenges and needs require the highly-skilled, comprehensive team at Boston Children’s that she has used since she was 18 months old. Her family uses Tricare Select in order to have the most flexibility with providers. That makes for burdensome travel costs, however, especially when she has long inpatient stays. But the trade-off is freedom to choose and freedom from referral management which can get excessive and burdensome with a dozen speciality providers.  Thanks to the travel assistance of Angel Flight Northeast and JetBlue, she is able to keep her care at Boston Children's Hospital even though her family is stationed elsewhere.

We could use your help funding the following: 

$10000 for a Motorized Ceiling Track Lift System:

Esra has had a growth spurt recently and caregiving for her now requires heavy lifting.  The family needs help to purchase a ceiling track lift system to eliminate the strain of constant lifting.  Esra’s mom has scolisosis and Lyme disease which make lifting a major effort.  However, the system is considered non-portable because of the tracks and a luxury item because of the motor so it is not covered by military insurance.   We will take all the components of the lift system, including the track, to our next home.

 $3000 for an Accessible Kitchen Sink:

The military-provided ADA home the Edwards family lives in is not completely accessible making independent living and learning a challenge for Esra.  She cannot reach the kitchen sink (or the oven, the stove or the counter for the matter!) How this is an ADA home is beyond us! She cannot reach the kitchen sink and is losing out on valuable opportunities to participate in the household rhythms of family work which are so important for development and well-being.  This estimate is for the sink and labor.  We will take the sink with us to our next home. 

 $4000 for an XRover stroller/bike trailer combo imported by Frank Mobility:

We would love to enjoy the outdoors together as a family.  However, Esra must stay home because we do not have a safe and enjoyable way to include her. We have found an innovative stroller/bike trailer that is all about inclusion and helping the entire family be outside and exploring together. This would provide her the seating support she needs and give us biking and walk/run options that let her enjoy being with us and not left at home.

$9,000 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 and budget. Accessible travel with kids is not easy!) The van needs to be outfitted with a Bruno lift which will her help enter and exit the van safely while also giving her added comfort while traveling for long periods.  Once we have the Diesel van modified , we will be sell our current mini-van and put the funds from it’s sale into modifying an RV for Esra's needs.