Wallingford girl, 5, battling serious brain disorder gets new best friend

Vada Shapiro, 5, of Wallingford kisses her new puppy, Penny.

Vada Shapiro, 5, of Wallingford kisses her new puppy, Penny.

Aliza Shapiro / Contributed photo

WALLINGFORD — When Aliza Shapiro asked her ill 5-year-old daughter Vada, “If you could have anything you want, what would you have?” the child said, “a cookie.”

When told to give another answer, Vada responded, “a unicorn.”

Vada, who suffers from a rare, debilitating nervous system disorder involving a hemisphere of the brain, actually got her third choice — a puppy. And now, she has something better than a cookie or unicorn — Vada has “a best friend,” her mother said.

Penny, an adorable mini golden retriever — so gentle she’ll sit next to Vada in her pink Cadillac Power Wheels car — has been not only an emotional support and friend to Vada at a time the pandemic shut down the girl’s social life, but Penny also is making the girl physically stronger by keeping her active as she battles Rasmussen’s encephalitis.

Vada Shapiro, 5, of Wallingford, loves to play with her new puppy, Penny.

Vada Shapiro, 5, of Wallingford, loves to play with her new puppy, Penny.

Aliza Shapiro / Contributed photo

“They’re together all the time except for doctors’ appointments,” and, even then, Penny comes along for the ride, Aliza Shapiro said. “The goal is when Penny’s old enough is for her to be trained as a service dog for mobility.”

For now, Penny keeps Vada moving and building muscle strength and balance through play — they walk, toss the ball, climb stairs, follow each other and play tug of war with a rope. They even do tricks together.

Rasmussen’s encephalitis is a rare inflammatory condition that attacks one hemisphere of the brain and causes epilepsy and cognitive decline that affects both physical and mental ability, Aliza Shapiro said. Doctors believe Rasmussen’s encephalitis is an autoimmune disorder, but they are not sure, Shapiro said.

Vada lives with muscle weakness — she can’t lift her right foot, and she wears a brace — and has numerous seizures each day, but not the type that make a person lose consciousness.

“She’s a very happy little girl. You’d never know what she lives through every day,” Shapiro said, noting Vada even “dances through the seizures,” when she can.

Vada Shapiro, 5, of Wallingford, takes a ride in her pink car with her new puppy, Penny.

Vada Shapiro, 5, of Wallingford, takes a ride in her pink car with her new puppy, Penny.

Aliza Shapiro / Contributed photo

Vada receives physical therapy and occupational therapy, and soon will start speech therapy because sometimes she can’t find the right word even though she knows what she wants to say. She has tried 11 seizure medications, and is on now on three such medications, Shapiro said.

The only known cure for the disease is a major surgery in which surgeons disconnect one hemisphere of the brain, possibly becoming seizure-free, Shapiro said. The patient can learn to walk again, but it would cause some loss of fine motor control and vision impairments, she said.

The brain surgery could be in the future for Vada, as some of those who have had it have graduated from college, married and gone on to lead independent lives, Shapiro said. Vada’s affected side is on the left, which might put her language ability at risk were she to have surgery.

The question about what Vada might wish for was posed by Shapiro because the family contacted Make-A-Wish Connecticut at the suggestion of a professional at Boston Children’s Hospital, where doctors had confirmed Vada’s Rasmussen’s encephalitis following a surgery in January.

Vada Shapiro, 5, is all smiles these days because of her new puppy, Penny.

Vada Shapiro, 5, is all smiles these days because of her new puppy, Penny.

Aliza Shapiro / Contributed photo

The organization, headquartered in Trumbull, was able to grant the wish because of a donation of more than $10,000 from Quality Subaru in Wallingford.

“We chose this because we’re trying to make a child’s life better,” said Jack Blanchard, customer relations manager for the Wallingford dealership. “It is a beautiful, beautiful dog and they bring a lot of happiness to people in general — that unconditional love.”

In addition to the dog, which was flown in from a breeder in Utah, Vada received a year of veterinary care for Penny as well as toys, dog accessories, dog food and a gift card to Petco.

Vada chose the name Penny off a list provided by her parents and that made Shapiro happy because her late mother, Pamela, had the nickname Penny.

When the Shapiros decided they wanted a mini golden retriever breed because it is small and sheds less, they contacted a breeder in Utah with a long waitlist. But the breeder, Michelle Taylor, was so touched by the story that she made Penny available, as she had held her out of a litter.

Vada Shapiro, 5, of Wallingford, has a new best friend in her puppy, Penny.

Vada Shapiro, 5, of Wallingford, has a new best friend in her puppy, Penny.

Aliza Shapiro / Contributed photo

Aliza Shapiro and Vada’s father, Ethan Shapiro, said Penny is like a dream puppy — easygoing, smart and playful — but not over-playful.

“She’s amazing. We could not have gotten a better dog,” Aliza Shapiro said. “I knew it was going to be a good dog because the breeder treated her dogs like their family dogs.”

Ethan Shapiro, a dog person who grew up with dogs and is in charge of Penny’s professional training lessons, said, “Everything we are doing is to set her up to be service dog and help Vada.”

Vada Shapiro, 5, of Wallingford, loves taking walks with her new puppy, Penny.

Vada Shapiro, 5, of Wallingford, loves taking walks with her new puppy, Penny.

Aliza Shapiro / Contributed photo

Once that happens, when Penny is old enough, she can accompany Vada to appointments.

Vada gives Penny a “good morning kiss” each day and sings her lullaby each night — “All is Found” from Frozen II — “Where the north wind meets the sea, there’s a river full of memory. Sleep, my darling, safe and sound. For in this river all is found.”

“I love Penny,” Vada told a Register reporter.

When Vada met Penny for the first time, she exclaimed, “Oh, my God, it’s my dog,” and kept hugging her. She had seen pictures.

From left, Peter Zagorski, general manager of Quality Subaru in Wallingford, hands over a puppy to Vada Shapiro, 5. The Subaru dealership was able to gift Vada the puppy through a donation of more than $10,000 to Make-A-Wish Connecticut. Vada has a rare medical disorder.

From left, Peter Zagorski, general manager of Quality Subaru in Wallingford, hands over a puppy to Vada Shapiro, 5. The Subaru dealership was able to gift Vada the puppy through a donation of more than $10,000 to Make-A-Wish Connecticut. Vada has a rare medical disorder.

Contributed photo

Since there has been a pandemic and Vada hasn’t started school yet, the only playmate she’s had is her beloved older sister, Mila, 9. The family moved here from Florida a few years ago and that’s where Vada’s best friend lives.

“Emotionally, it’s just having a best friend,” Aliza Shapiro said of Penny.

Ethan Shapiro said the medical ordeal has been tough.

“It gets to the point where you can’t do anything for your kid and there’s no worse feeling in the world, knowing there’s nothing you can physically do to make your child better,” he said.

Carin Buckman, spokeswoman for Make-A-Wish Connecticut, said the organization is in the business of delivering hope — more important in these trying times.

“Hope is a superpower that kids living with critical illnesses, like Vada, have been tapping into long before many of us heard the word ‘lockdown,’” Buckman said. “The promise of a wish is so much more than a temporary escape. As we’ve seen with Vada and her puppy Penny, her wish has given Vada a wellspring of strength to keep fighting for better days.”

Anyone interested in contacting the Shapiros can do so by emailing penny.jeanphotography@gmail.com.