Mother’s fight to find treatment for children with brain tumours

As a single working mother Claire Marsden doted on her baby son. So when she was accused of trying to harm him her world fell apart.

Months of social service and police investigations found there was no truth in the allegations, but only after Claire had been arrested and held in a cell for 12 hours.

“It was the most terrible thing to happen,” says the 29-year-old from Long Preston.

“I was arrested and Harry was taken to Airedale Hospital. They said that someone had alleged I was trying to overdose him with Calpol. It was totally ridiculous.” In the end Claire was allowed to take Harry home and no charges were ever brought against her. But within a few weeks Harry started to be sick.

“He was sick all the time, uncontrollably. I took him to the GP and went back and forth to the hospital but they said it was gastroenteritis.”

In fact, Harry had an aggressive brain tumour. Although he had been taken in to hospital earlier that year, he had not had a brain scan until the following October.

He was taken to Leeds General Infirmary where doctors wanted to operate but little Harry’s condition deteriorated too quickly. He was put on chemotherapy but he started to suffer fits which resulted in sever brain damage. Just two weeks after he was diagnosed Claire had to take the difficult decision to turn off Harry’s life support system.

“They said that he was so brain damaged that he would have no quality of life or be able to breath on his own,” says Claire. “In the end he did breath for 12 hours by himself which was really hard and then he passed away.

“I spent the whole night holding him, cuddling and wishing some miracle would happen. I wanted him to defeat medical science and just wake up. I spent that night cuddling him on a camp bed talking to him telling him how much I loved him and how he had changed me forever, how he will always be in my heart and head forever. He will always be my first thought in a morning and my last thought before I go to sleep.”

After Harry was diagnosed Claire discovered that research into brain tumours is underfunded.

“I discovered that it was the biggest cancer killer in children and yet so little is really know about them.”

She decided she wanted to do something to keep Harry’s memory alive and also to help fund research into the terrible disease. “I want to raise awareness of brain tumours in children. They say it is rare, but then you hear about so many children with them.”

Claire is raising funds through the charity Andrea’s Gift for the Brain Tumour Research Centre in Leeds. Andrea’s Gift has joined forces with Leeds children’s cancer charity, Candlelighters to fund the new brain tumour research lab – one of only a few in the country. The lab is based at the University of Leeds Institute for Molecular Medicine (LIMM).

Dr Sean Lawler, an eminent neuro-oncolgy scientist leads the group called the Translational Neuro-oncology Group at LIMM. His vision over the next five years is to build a research group dedicated to improve the outcome for patients with brain tumours. Brain tumours affect both adults and children; in fact, paediatric brain tumours are now the leading cause of cancer mortality in children, and the new research group will be looking closely at this problem. The scientific team will collect tissue from every (consenting) brain tumour patient who has surgery at Leeds General Infirmary. The tissue will be analysed and cells will be grown and in time, projects will be developed that correlate how each patient responds to therapy. The ultimate aim will be to develop the group into one that is nationally and internationally recognised as a leading centre for translational brain tumour research.

“I will never get over Harry’s death, but I want to do something to make sure his death was not in vain and to try to stop other families having to go through what I have gone through,” says Claire, who has been supported emotionally by Harry’s father.

“We are no longer together but he is the only person who can possibly know what I am going through.”

Claire is now organising a ball at Skipton’s Rendezvous Hotel on April 15 to raise funds. Tickets, are available from the Rendezvous Hotel and Chic Hair Studio in Skipton. www.andreasgift.org.uk/funds/harry.php