My Personal Story
The reason the charity was created,
the background of my daughter’s illness.
My personal family story
Hello, I’m Simon, that’s me in the red jumper. Apart from the odd donation to charities I would never have thought it would become a big part of my life.
Leigh-Anne, my daughter was born in 2001, she was always a poorly child suffering infection after infection and at Christmas in 2006 she became very unwell, and following a spell at our local hospital she was transferred to St. James’ Hospital in Leeds.
This is where my wife and I got the news any parent dreads, the diagnosis of Leukaemia, in this case Acute Lymphoblastic Leukaemia (ALL). It hit all the family hard and we immediately thought it would be a death sentence for my little angel, after all nobody survived Leukaemia did they?
We then met and made friends with other parents going through the same thing, and over the next few days as the harsh treatment started we learnt more about the disease from the doctors, nurses and social workers at the hospital.
The treatment was going to be harsher than standard ALL treatment as cancer cells had been found in her spinal cord following a lumbar puncture, it was going to be cranial radiotherapy and three years of chemotherapy.
Never to take the standard or the easy way though, Leigh-Anne had a severe reaction to a chemo drug called Asparginaise which left her with dangerously high blood pressure and a bleed on her brain.
In all, Leigh-Anne spent several weeks in intensive care, including another visit when she suffered a callapsed lung. In the end the safest treatment was to put her in an induced coma to allow her body to rest.
When Leigh-Anne was well enough to return to the children’s oncology ward, my wife an I were called into the consultants office. We knew it was going to be bad news, we could always tell.
The latest problem was the high risk of further reactions to the high doses of Chemo, so it was decided the best course of action would be a Bone Marrow Transplant. This was also dangerous as it would involve total body irradiation from high doses of Radiotherapy, taking her over the highest recommended dose because of her previous treatment. Despite the risks, and the long term complications it would cause, we knew it was the only way forward.
My wife, myself and my son were all taken for blood tests to check if we were a close enough match to offer our marrow, but despite keeping our fingers crossed we were not. Even a worldwide search on the Bone Marrow Register yealded no results and it wasn’t long before we were again called into the consultants office.
This time the visit was euphoric, we finally had some good news. We didn’t know at the time, but stem cells can be harvested from umbilical cord blood. From this two matches had been found for Leigh-Anne and best of all one of them was a 6 out of 6 match!
So this was it, four to six weeks in a clean room where Leigh-Anne had to stay and we had to scrub up to enter. After the high doses of radiation and the cocktail of chemo drugs, even a simple bug could kill her.
We kept our fingers crossed, said our prayers, and on Christmas Eve, a year since she became seriously ill we were able to take her home.
Leigh-Anne has been left with epilepsy and learning difficulties and will have other long term complications for the rest of her life, but we are thankful to the consultants, doctors and nurses for taking such good care of Leigh-Anne.
Knowing that the future was going to be a difficult path, I had to find a way to work around the long term care that my daughter would need.
Together with other parents we set up a charity that has grown to become Yorkshire Children’s Trust. It may only be a small charity, but I am proud for the help it provides to children in Yorkshire, that may otherwise be stuck at hospital or in other care facilities.
We rely almost entirely on voluntary donations, so please dig deep and make a one-off or regular donation. With your donation we can continue to support the most vulnerable children in the Yorkshire region.
EVERY donation really does make a difference.
Thank you for taking the time to read my story.
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