When their beautiful daughter Poppy was diagnosed with a life-threatening condition Vicki and Karl were devastated – but with Hope House’s help they are taking one day at a time and making the most of life.

“Poppy was such a happy baby and seemed to be doing so well. She started having seizures and it got to the stage where she was having 20 a day and we were having ambulances regularly,” recalls Vicki.

When Dravet syndrome was diagnosed just before Poppy’s fifth birthday their world went into freefall. Their bright and bubbly daughter’s future seemed so different to the one they first imagined. Thankfully, their doctor referred them to Hope House.

“We took some time to grieve, and counselling at Hope House helped me to accept how things were going to be. We had our bundle of joy and she was still our bundle of joy – it was just different,” says Vicki.

“The worst part of Poppy’s condition is that it can cause sudden unexplained death. So we try really hard to live each day with as many smiles as possible. Poppy is full of joy. She has taught us all so much because she grabs life with two hands and really lives it.

“When we first visited Hope House with Poppy it immediately felt like home. Poppy loved the playroom with all the toys and the nurses were so knowledgeable. The bedrooms weren’t at all clinical and that was really important because we had spent so much time in hospital.

“Our biggest fear was seizures happening during the night, but at Hope House there is always a nurse watching and monitoring her and medical expertise on hand. That is a level of care above what we can even provide at home so it gives us complete peace of mind.”

Hope House is a lifeline

Some of Poppy’s seizures can last for more than two hours and take huge amounts of medication to stop.  She has had thousands during her life, so it means Vicki and Karl can never totally relax. That is why respite care at Hope House is such a lifeline.

Says Karl: “Poppy counts down the sleeps to a visit. She loves Hope House and we can relax knowing she is safe and having a great time. We also get to spend quality time with our younger daughter Lyla, doing the things she enjoys but Poppy can’t do such as going out for a meal or to the cinema.

“It’s like having an extra member of the family who we can turn to, who knows exactly what our lives are like and how to help. We know if we hit a crisis they will be there – we are not alone. Life would certainly be a lot tougher without Hope House.

“As a father who was very apprehensive about my daughter going to Hope House at the start, I now know I didn’t need to worry. I’m so glad we went!”

Vicki agrees, and is so relieved that the family has Hope House to turn to, both now and in the future.

“We try not to look too far ahead. We’ve learned to live in the now and we try to be as happy each day as we can. When I try to consider the two options – whether we die before Poppy does or she dies before us – I don’t know which is worse. So we don’t think about it.”

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