This year, Andy Smith, 44, will run the Royal Parks Half Marathon in honor of Emily.In addition to raising money in her honor, Mr. Smith wants to help with the "mission" to find a cure for the disease that killed her.
Emily passed away in 2022, barely 11 days after being told she had an inoperable brain tumor while on vacation with her family.
Her dad, who works for the NHS and is from Hertfordshire, will wear a 23kg weighted vest during the marathon in central London. This is the same weight as Emily when she died, and he hopes to "carry her to the finish line."
Her family thought she was merely a little fatigued since she had been busy all summer with ballet shows, drama class presentations, and being a bridesmaid at a major family wedding.
Her parents said that when she woke up on July 28, 2022, she had "a strange feeling in her arm" and "began walking with a bit of a limp." But she kept playing with her bigger brother Harry and could run about.
Emily went to the nearest hospital for an appointment after her parents called 111 for medical advice.
Doctors weren't very worried about her symptoms, and blood tests showed nothing wrong, so they told her to go home.
But the last doctor she saw told Emily to get an MRI scan for the family's peace of mind. This showed that she had a tumor deep in her brain.
Mr. Smith added that the next several days were "unbearably traumatic" because "the horror of what was growing inside Emily's brain became clear."
Just a few days later, on August 2, Emily was upset and threw up.
Her tumor had started to bleed, and then she fell into a coma.
Her parents were advised that it was too late and that nothing further could be done to assist her, even though she was transported to the hospital for emergency surgery.
Emily was put on palliative care and died on August 8, 2022, barely 11 days after she was diagnosed.
Her dad recalled that night, "both of her parents were left numb with shock, trauma, and disbelief."
He said, "I was so heartbroken that it hurt."
Mr. Smith also added, "Emily was so full of life, and now she's dead." Emily had her whole life ahead of her, but now she'll never experience it. Things will never be the same for us again.
"Everyone thinks their own kids are special, but Emily was truly one of a kind." She was everything nice and nothing negative.
After she died, the couple started Emily's Fund inside the Brain Tumor Charity, which is the world's top charity that funds research into brain tumors.
Brain cancer is the leading cause of death for children and people under 40, although it gets less than 3% of the national budget for cancer research.
"Treatments haven't changed in decades. There are so many types of brain tumors that can't be cured right now, so it's important that research keeps going," Mr. Smith said.
Along with his friends and family, he has raised almost £100,000 for the charity since 2023.
This includes his son Harry, who is Emily's brother. Harry has won a Points of Light award from the Prime Minister and a British Citizen Youth Award for his work raising money.
Harry raised money by climbing Scafell Pike, England's highest mountain, in 2023, swimming a mile a day for a marathon in 2024, and doing a duathlon this year. For the duathlon, he cycled 80 kilometers and then ran 8 kilometers, for a total of 88 kilometers, which is the same distance as Emily's age and the date she died.
In October, Mr. Smith and Emily's uncle Jonny will run the Royal Parks Half Marathon to earn extra money for the organization.
Mr. Smith stated he only wanted to make his daughter proud before the marathon. He added, "It's too late for her, but the goal is to raise more money, give more hope to others, and make things better for other families."
"I'm going to be running with 'Emily's Dad' on my vest, and I love it when people cheer for 'Emily's Dad!' as I run by."
Mr. Smith stated it was "still unbelievable" to him that "this is forever" and that Emily is "not here."
He added that grief and bereavement counseling had been helpful for him and his family. He also said, "I would recommend this to any parent who has lost a child." "You need to talk about it."
Mr. Smith went on to say, "It's vital to remember that sorrow isn't a straight line where things get better or you 'move on.' I would never want to.
"I always remind myself that this deep feeling of grief is equal to how much love we all have for Emily, so I'll never let it go away."
Our eight-year-old daughter, Emily, was incredibly bright, creative and loved playing her piano. She was a graceful ballet dancer, talented at drama, hiking, swimming and climbing. She even conquered Snowdon on 1st June 2022 with boundless energy and enthusiasm. She was a kind friend to many and a loving daughter and sister to her older brother, Harry. She was the sunshine in our family.
At the end of July 2022 we first noticed that Emily was unable to use her right arm normally. It didn’t hurt and didn’t seem to be bothering her much to begin with. She just said it felt “unusual”. It was quite subtle and she could still do normal things. The next day, it was no better and had started to affect her right leg too. We called 111 and they arranged for us to attend our nearest hospital. Although Emily’s symptoms were still quite mild, they decided to do an MRI scan that evening for some reassurance. They found a brain tumor. We were told Emily had none of the typical brain tumor symptoms, such as sickness and headaches, because of where her tumor was located.
Emily was then transferred to Addenbrooke’s in Cambridge and there was a plan for surgery to remove as much of the tumor as they could with post-op radiotherapy to slow the growth down. We were told the tumor was cancerous and in a really difficult part of the brain to get to. On the children’s ward, Emily could still walk with help and remained determined and independent, wanting to play in the garden on the ward and in the play room where we did some painting together, all the time waiting for her planned surgery due to take place at the end of the week. On the ward we were introduced to a Tom’s Trust Psychologist, Angela.
In hospital, Emily deteriorated very quickly as the tumor had started to bleed and swell. On 2nd August 2022, she collapsed and was rushed to theatre. Emily spent her remaining days on the Paediatric Intensive Care Unit and never woke up after her surgery. She died in our arms on the 8th August 2022. Nothing anyone could have done would have changed Emily’s outcome ultimately because of the type of tumor that she had. A Diffuse Midline Glioma currently has no cure.
Since Emily’s admission to hospital, and weekly ever since, we have been getting great support from Angela. It helps that Angela had met Emily on the ward before she died and also spent time with us both, and Harry, before Emily’s collapse.
Angela has been the most amazing support to us throughout the worst time of our lives, helping us try to bear the unbearable loss of our daughter. Angela has helped us both understand grief and how we can learn to live alongside our love and grief for Emily as we navigate life without her. She has worked with us to help process the traumatic events around Emily’s rapid decline and has spent much needed time with Harry too. He trusts her and can talk to her and she really understands him. We are truly grateful to Tom’s Trust for identifying the need for mental health support for children and families affected by brain tumors. We don’t know how we could have faced this without your help. We want you all at Tom’s Trust to know that Tom’s legacy lives on through the support that Angela gives us. So, simply, thank you.