New Bedford Girl Living With Rare Genetic Mutation 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 New Bedford family.
A High-Risk Pregnancy
When Kathryn DaSilva was 19 weeks pregnant, she and her husband Thomas found out that their unborn daughter had hydrocephalus, which means that there was fluid in her brain. Talia was then found to have a monoallelic mutation of the col4a1 gene.
"It's basically a frameshift in her DNA," Kat DaSilva said. "It is a very rare disease."
Approximately seven to 13 percent of kids in the country have this condition and at least 30 percent of their parents do not carry this gene. Kat and Thomas are not carriers, but the Col4a1 mutation still affects their little girl. Talia's condition worsened as the pregnancy progressed.
"At eight and a half months pregnant, they told me to plan her funeral because they did not think I was going to be able to deliver her alive," DaSilva said.
A Strong Fighter
Talia is now a precious three-year-old fighter who is giving mom, dad, and her three older sisters a run for their money.
Due to her diagnosis, Talia will never speak or walk. She will be developmentally delayed, with possible loss of vision, and experiences muscle cramping and tightness. She also has seizures, heart/circulation issues, and is a very high risk for aneurysms and strokes. She cannot eat, so she is fed through a feeding tube. Within the first four months of her life, Talia endured five brain surgeries.
Talia has been admitted to the hospital more than 30 times in her three short years. Each time varies from two or three days to three weeks. She has had two surgeries this year to correct her hip dislocations and suffered a brain bleed as a severe complication.
Talia celebrated her third birthday in August and is completely dependent on her loving parents. Thomas is a diesel mechanic for the City of New Bedford and Kat works at CVS. While her parents are at work, Talia has an attentive nurse to care for her extensive needs. She recently started school at the Schwartz Center, where they are working to make Talia stronger each and every day she is there.
Over Thanksgiving weekend, Talia experienced difficulty breathing. She was admitted to Hasbro, but they are still unsure of what is going on. Respiratory illnesses are much more severe for Talia than for the average person with a stable immune system. She is recovering, but each new illness brings on a new level of anxiety since there is no determined life expectancy for her condition.
"The doctors say to take her home to enjoy her and make memories with her," DaSilva said. "That's honestly what we do with her. And it's taken a toll on our older children."
How You Can Help
Kathryn and Thomas would love to improve the overall quality of life for their daughter. One "mini miracle" would be to have a wheelchair ramp installed at their house to make their home more easily accessible since Talia is a growing girl and it's getting harder to carry her in and out of the house.
The DaSilvas would love to have a new big girl bed for Talia since she will soon outgrow her crib. They would require something on the idea of a hospital bed that they would be able to raise up and down. The bed will also need some sort of padding on each side.
Talia loves music and Disney princesses. Listening to Disney songs while playing dress-up is a favorite pastime and a way to spend quality time with her six-year-old sister, Averyanna. The two girls love the movie Frozen, and Elsa and Anna are their favorite characters.
Talia is doing so well working with the teachers and staff at the Schwartz Center in Dartmouth and her parents would love to continue that momentum at home. Having the necessary adaptive equipment available in the house would be wonderful. Here are a few of the items that Schwartz has suggested:
It is not necessary to buy these items individually. United Way of Greater New Bedford will purchase the necessary items on behalf of the family with the donated funds from the Mini Miracle program.
Talia would greatly benefit from her own personal tablet to engage with apps and music. Averyanna has also asked for a kids' digital camera to take pictures of her family. Shianne is 12 and has asked for a clay bead jewelry kit. Alysha is 15 and the oldest daughter. She has asked for makeup and clothes from Target.
Talia makes frequent trips to Hasbro, so the family could use a Cumberland Farms gas card to help with that expense. They have most of their meals at home, so a gift card to purchase groceries from Stop & Shop would also be greatly appreciated.
Help create a Mini Miracle for the DaSilva family this holiday! Donations will help cover the costs of all of these mini miracle wish-list items.
Text to Donate: Text WISHES21 to 243725. 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 Cottage Street Motors, Avalon Medical Spa, Cardi’s Furniture and Mattresses, First Citizen's Federal Credit Union, Interiors by Paul Chaisson, and Sam Karam and Sons.