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Vanessa’s story

April 3, 2024

While laying on her mother’s lap, just a month after she was born, Vanessa started foaming at the mouth and shaking. Her parents, Praveen and Natalja, immediately called 999 and drove their daughter to the hospital, unknowingly embarking on a journey that would change their lives forever.

“I was terrified at what was happening,” Vanessa’s dad, Praveen, reflected.

“Doctors started looking into her condition, asking us questions, like ‘does the family have a history of epilepsy?’”

Despite initial stabilisation, her seizures persisted in the months that followed, and she was hospitalised a further two times.

“Doctors tried all sorts of medications. For at least a month and a half, she was intubated.”

A few years later, after taking part in the 1000 genome study, it was discovered Vanessa’s epilepsy was caused by a FGF 12 gene mutation.

“That means it is her own mutation and it has not passed from either mum or dad,” explains Praveen. “At the time when we were told in 2018, there were only five or six children in the UK that had this particular gene mutation and very few, under 20 children over the world, have been identified with it.”

Her parents describe their eight-year-old daughter as a very cheerful, happy girl, who loves being in the company of her siblings, Trisha, ten and Tristan, five. Vanessa is wheelchair bound and has several medical conditions. She’s fully dependent on her family for all her needs and has no movement in her right limbs due to a stroke when she was a baby.

When the family were first introduced to Shooting Star Children’s Hospices, they were apprehensive. “After doing some research, I understood Shooting Star was a place where they provide palliative care, and this honestly scared me,” explains Natalja, Vanessa’s mum, “but when I came here, it was completely different.”

Praveen added, “It was the first time someone, in all this time, asked, ‘how are we?’”

Since 2015, Vanessa and her family, including her siblings, have been supported by our bespoke wraparound care service.

“We go to Shooting Star for sibling days. I’m involved in parent’s meetings, which are organised quarterly, and group therapies, and Natalja goes for pamper days. In 2016, I thought of doing something to raise funds for Shooting Star, so I signed up for the Fire Walk. It was an amazing experience,” Praveen explains.

“On Fridays, Tristan says, ‘are we going to Shooting Star tomorrow? Are we going to Shooting Star tomorrow?’ He gets so excited.”

Vanessa also has respite nights, where she can stay at our purpose-built children’s hospice, Christopher’s in Guildford.

“When she goes to Shooting Star, we are confident Vanessa is going to have a great time. She’ll use the hydrotherapy pool and enjoy sensory sessions. At the same time, we have some time to ourselves, and we get to spend time with our other children.”

In 2018, the family was able to travel to India to see Praveen’s parents and sister for the first time since Vanessa was born.

Praveen said, “It was only possible because of Shooting Star, who were able to accommodate Vanessa’s stay for a long period of time. Due to her condition, she can only take a flight up to three hours long within Europe.”

“The support is ongoing. Without them, we wouldn’t be where we are now. My parents aren’t here and Natalja’s parents have both unfortunately passed away now, so we look at Shooting Star as family.”

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