Fairhaven Girl Battling Rare Brain Disorder Needs a Mini Miracle
This holiday season, WBSM and United Way of Greater New Bedford have teamed up to pull off a Mini Miracle for one deserving, unsuspecting Fairhaven family.
When Jenn Brengle was 34 weeks pregnant, she and husband Sebastian Brengle found out that their unborn daughter had a rare brain disorder called Miller-Dieker Lissencephaly (liss-en-sef-uh-lee). Gwendolyn was born with a smooth surface to her brain where there should be ridges and folds. Although this can be genetic, Gwen’s case is completely random and approximately one in 100,000 people are born with this disorder.
Due to this diagnosis, Gwen cannot speak or walk. She cannot close her eyes and requires them to continually be lubricated throughout the day. She cannot eat, so she is fed through a feeding tube.
Gwen has also been suffering from frequent and severe seizures since she was just six months old. She has many developmental delays and her cognitive ability will be comparable to that of a six-month-old baby for the rest of her life.
Gwen just celebrated her fourth birthday on Wednesday, December 2, and is completely dependent on her loving parents. Sebastian works nights as a bartender at Seaport Inn Grill. Jenn is a speech therapist for New Bedford Public Schools. Mom and dad switch shifts so that Gwen always has a parent at home to care for her. A nurse will come to assist on weekdays, but due to COVID-19, that service has been infrequent.
Gwen is at high-risk for respiratory infections, so she has been home since the pandemic started in March for her own health. Mom and Gwen miss their Target runs together, but it’s important that everyone is safe at this time.
While Gwen cannot really see, her hearing is perfect and she loves listening to audible books. Her favorite is Harry Potter.
Sebastian and Jenn would love to improve the overall quality of life for their daughter. One mini-miracle would be to install a bathtub in their home so that Gwen can wash comfortably and not have to sit in a shower chair. This will make bath time safer and easier.
The Brengles would love to convert the family’s Honda Odyssey into a wheelchair-accessible vehicle. The family travels to Boston and Providence for doctor’s appointments, so having this work done will benefit everyone greatly.
Gwen is currently in need of a handicapped car seat as she is still a little on the small side for a traditional wheelchair. The RECARO Monza Nova 2 Reha was selected by Gwen’s physical therapist, and it swivels for easy access.
Sebastian and Jenn would like Gwen to be able to enjoy family time in the living room without having to sit her up on the couch. This Ppod Chair in Mermaid Pink, Size Large, will allow her to hang out with her favorite people at home.
Since Gwen loves to snuggle on mom or dad’s lap, they would appreciate a wide rocking recliner to rock Gwen comfortably at night. Either Sebastian or Jenn is up every night between 3 a.m. and 5 a.m. with Gwen. A comfy chair will give them a cozy place to listen to Harry Potter and drift back to sleep.
An AC wall unit will help Gwen relax at home, which is the safest place for her to be.
Help create a Mini Miracle for the Brengle family this holiday! Donations will help cover the costs of all of these mini-miracle wish-list items.
Text to Donate: Text WISHES to 313131. You will be sent a United Way e-link that allows you to make a donation via credit card to this family when you select MINI MIRACLE from the drop-down menu.
By Check: Make checks payable to the United Way of Greater New Bedford and in the memo line, write MINI MIRACLE. Checks can be mailed to United Way of Greater New Bedford, 128 Union Street, Suite 105, New Bedford, MA 02740.
Donate by Credit Card: You can make a secure donation to the United Way via credit card HERE. Select MINI MIRACLE from the "Please Select a Family" drop-down menu.
WBSM's Mini Miracle with the United Way of Greater New Bedford is an extension of the Annual Holiday Wish program. Families have been pre-selected. Support for this program is made possible by Tastebuds Bistro and Catering, Cottage Street Motors, Lech Auto Body, Araujo Brothers Plumbing and Heating, Seaport Inn Grill, and Couto Construction.