As Natasha Thompson wakes up each morning, several thoughts run through her mind. She thinks about her daughters’ schedules for the day, what they need for day care, when she will be able to clean the house and what to make for dinner.
Such are the mornings of most parents with children under the age of 5. However, Thompson’s 17-month-old Violet has a condition called “chromosome deletion” that adds giving medications, going to appointments and making sure Violet has enough food to Thompson’s mental list.
“We did not find out anything was wrong with Violet until birth,” Thompson said. “On my 19-week routine ultrasound, her femurs were short and her left kidney was enlarged.”
Thompson said that doctors did a repeat ultrasound, but the results remained the same. Violet was not diagnosed with chromosome deletion until after she was born, when an arm deformity was visible. Then further testing began.
“Immediately I did not know what that meant,” Thompson said. “I just wanted to hold my baby.”
Thompson said that Violet’s arm anomaly is the least of her worries. Because chromosome deletion is rare – 11 people in the world are known to have it – there are many complications she and her husband Jake deal with daily.
“There is so little information about the deletion that it is all sort of a mystery,” Thompson said. “Every day is a different day.”
Thompson said that one of the challenges the family faces daily is medication. Violet developed a seizure disorder after a May 2012 kidney surgery.
“That was one of the scariest times of our lives,” Thompson said. “The doctors could not control the seizures with medication, so they had to induce a coma and put her on a ventilator to help her breathe.”
“We have been blessed that Violet has not had any seizures since then, but it is always scary and in the back of my mind,” Thompson said.
Violet also needs medication for her chronic urinary tract infections. Thompson said she worries about how Violet got the last one and what can be done to prevent the next.
Thompson also is concerned about the long-term effects antibiotics may have on Violet. She is on additional medication to make sure she has regular bowel movements and has a feeding tube in her stomach.
“My life is surrounded by feedings, calorie counts, bowel movements and medication lists,” Thompson said.
The mother also worries about how Violet’s condition affects her older sister, 3-year-old Grace.
“I think Violet’s needs affect Grace the most,” Thompson said. “Anytime Violet needs to be hospitalized I am taken away from home, and Grace really is attached to me and misses us so much.”
Thompson said that Grace “absolutely adores” Violet. She said she sees the love between her daughters and calls Grace Violet’s “big protector.”
“I yearn to watch her grow and take care of Violet as they get older,” Thompson said.
Although Thompson is optimistic, she wonders if people who are not always around Violet will be able to communicate with her. She has many unanswered questions about Violet’s future.
“Will she walk?” asked Thompson. “Will she sit up? Will she learn to read? Will she ever start eating consistently again?”
In spite of all she and her family have been through, Thompson remains adamant that Violet is “just like any other child.” She said anyone who meets Violet falls in love with her.
“What does any child want?” asked Thompson. “To be loved, to be accepted, to be entertained. Violet is no different.”
A benefit for Violet and the Thompson family will be held 2 p.m. Sunday, June 30, at the Merryland Ballroom in Rosholt. There will be games, prizes, basket raffles, a silent auction and bake sale. Local bands, Windsor Drive and Uncertain Storm, will also perform.
Suggested donations at the door are $7 for adults, $5 for children ages 4-12 and free for ages 3 and younger. The donation includes a meal and beverage. Thompson said she is grateful for the generous people who made the benefit possible.
“We will never be able to express our thanks enough for the love and support we feel on a daily basis,” Thompson said.
For more information about Violet’s condition, her family and the benefit, visit the website Violet’s Voice at www.violetsvoice.org. Thompson said the site was created to get the word out about chromosome deletion and to keep friends and family updated on Violet.
“Our family is not that much different from the next,” Thompson said. “We are just a mother, father and our children, and we want the best for our kids.”