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Violette S

Better late than never

It started with a serious case of morning sickness.

Massachusetts-native Debi Sheck had spent the better part of her adult life listening to doctors tell her she would never get pregnant. She pursued fertility treatments all the way up to In Vitro Fertilization (IVF) with no success. Now, here she was, 46 years old with a sinking suspicion that her sudden and intense nausea was her first pregnancy symptom. 

She was right.

“It was amazement, wonder, and total terror at being a single mom at age 46,” Debi said.

Once the initial shock wore off, Debi realized that her greatest dream was coming true. She was going to be a mom, some 20 years in the making. Better late than never, as they say.

Her nausea, though, would become a common theme, and Debi was eventually hospitalized for preeclampsia (high blood pressure during pregnancy) and hyperemesis gravidarum (severe nausea and vomiting). She spent more than six weeks in the hospital, only leaving her bed twice each day before her baby decided it was time to meet the world.

At 35 weeks pregnant, Debi delivered a baby girl via emergency c-section, a tiny 4-pound, 11-ounce miracle: Violette.

The day was not without complications. Debi had an allergic reaction to medication she received during the procedure, and both she and the baby nearly died. 

“I woke up in recovery with my parents there with me and my mom crying,” Debi said. “They told me Violette had come out not breathing and had to be resuscitated twice. She was intubated and in the Specialty NICU.”

“The breathing tube was covering her tiny little face and she had many IVs,” she said. “Being a phlebotomist myself, I could tell they had a hard time getting veins because she was so bruised. Violette was in the NICU for 24 days.”

Twenty-four days before they were finally reunited at home. Better late than never.

The two got into a rhythm and despite a few rounds of croup for Violette within her first year, they seemed to be on the other side of the drama.

Unfortunately, it wouldn’t last.

On Mother’s Day in 2014, Debi was sitting in front of her friend when they asked why Violette’s lips were blue. “I was so terrified,” Debi told us. “My mom and I jumped in her car and drove to the closest urgent care. They stabilized her but told me she had to go to the hospital immediately for oxygen. We were only there for about 10 minutes when they decided to life flight us into Mass Eye and Ear.”

The ENT surgeon that treated Violette noticed her windpipe was much too small, likely caused by extensive scarring from her first intubation the day she was born. Since that traumatic day, Violette has undergone three reconstruction surgeries on her windpipe, all of which have failed.

Violette is now 7 years old, and she’s been diagnosed with 14 medical conditions, and three of the most notable are White Matter disease, STXBP1 (rare genetic mutation), and subglottic stenosis (narrow windpipe). 

But, for seven years now, Violette has approached life like a kid without a care in the world.

She loves all things music-related (“My Darling Clementine” is a long-time favorite) and has developed a strong bond with her uncle Robert. 

It probably doesn’t hurt that he plays the dulcimer for her, too.

She is smiley and joyous, and so full of light. One of the very first things she does upon waking up is look for cuddles and hugs from her mom. 

She really is an angel.

That says a lot about a little girl who has overcome so many obstacles already. Violette has spent more days in the hospital than out of it, including all holidays, birthdays, and many other special occasions.

“The first birthday party we had for her wasn’t until she was four years old,” Debi said. “And last year was her first Christmas at home.”

But things were starting to turn around early in 2020. Violette was attending school with six other medically-complex children - only made possible thanks to the school’s transportation program. Not surprisingly, she’s a natural social butterfly and loves to learn. She also had a birthday party at home, one of the few she’s celebrated outside the walls of a hospital. Better late than never, right?

“Regardless of what she has been through, and continues to go through, she will always give you a huge smile and engage you to play with her,” said Debi. “Violette has a love for life and nothing makes her happier than learning and trying new things.”

Then came COVID-19.

We have all struggled in different ways with the impact of this global pandemic. Violette and Debi are certainly no different. With her highly-compromised immune system, Violette had to be pulled from the classroom and school she loves so much. And because Debi does not own a vehicle, that means this social butterfly’s only out-of-house activity just got nixed.

Since February 23, 2020, Violette has not left her home. Debi has been outside four times. FOUR times. They’ve spent nearly every waking hour of the last nine months confined to their house. There is no vehicle to drive to the park for some fresh air. No car to take out on the road and listen to some music. Nothing. 

Perhaps worst of all, Debi has to rely on transportation from costly ambulance services if and when Violette has a medical need. It’s hard to fathom, and yet it’s been their life for years - long before COVID-19 and maybe long after...if not for Chive Charities. 

Our community of donors heard their call for help and did what they do best: they answered with a life-changing gift. (You can become part of that community HERE). Now, Debi and Violette are getting a new wheelchair-accessible van from our friends at AMS Vans for a total impact of $40,992.25.

That dollar amount is impressive and awe-inspiring and every synonym for amazing we can think of. But it doesn’t even scratch the surface of what was made possible for this family.

“This wondrous, special gift will open up our world in so many ways,” Debi tearfully explained. “I can take her to her first playground, her first play date, her first movie, her first restaurant many firsts she has never been able to have. She has missed so much in her seven years, and it will make my heart so happy to experience all those things with her.”

Seven years of dreaming of what could be waiting outside the walls. Now, Violette can find out.

Better late than never.

Through donations of $5 and up, our donors gave Violette and Debi a chance to experience all the things we so often take for granted. For them, it’s freedom, independence, and opportunity. And as Violette’s dreams are coming true, somewhere another family waits and hopes for their chance. With your help, we can give it to them. DONATE HERE.

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