Sacha Langton Gilks from Shaftesbury, North Dorset has three children, her eldest son died from Brain Cancer in 2012. Ever since then she has been the lead campaigner for HeadSmart and hopes to raise awareness of dementia in children.
Sacha’s son, David was diagnosed with a form of brain cancer called Medulloblastomas, at the age of 11 in 2007. Medulloblastomas are a group of cancerous brain tumours, which is the most common form of brain cancer in children and young people.
At the time of the second relapse in May 2012 the family found out that his cancer was completely untreatment to the point that there was no longer a cure this was because it had spread throughout his entire body. At this point the family stopped the chemotherapy so that he could live his last few months pain free and at home. “We spent the last three months of his life, doing palliative treatments which was symptoms controlled through comfort care, all side effects of his brain tumour spread down his spine so pain, seizures, sickness and very severe dementia which people don’t realise.”
It’s very rare in children, some brain tumours can have these symptoms.”
The dementia in David became more noticeable when the cancer became terminal, but the doctors and nurses never mentioned it to Sacha at Southampton General Hospital and she explains how she had to say it to them. “No doctor of health professional said that word dementia to me and I think that the reason was that they would somehow stop me from being upset when it was happening quite obviously.”
I think they are worried about saying the d word dementia to a parent about a child or young person which I understand but it doesn’t stop it from happening to me.”
Luckily for Sacha she got the understanding from one overnight nurse who had previously trained in adult and child nursing. In the past the nurse had done a lot of work with elderly people with dementia. “This Marie Curie nurse had nursed lots of Alzheimer’s patients so she knew how to keep him calm.”
Once the chemotheraphy stopped, David was better in his self and for this reason Sacha believes he was alive for longer, it was only in his last few days that she knew he was dying because of the support they received through palliative care.
There is only two other families that Sacha has met whose children have had dementia due to a life shortening condition, highlighting just how incredibly rare dementia is in young people.
Sacha is now working towards giving every family the best palliative care and allowing them to decide on their end of life support.
Sacha has recently released a book alongside other parents who were passionate about improving end of life care for children. The book was then checked by professionals to ensure that everything was correct.
Alongside this, Sacha is attending a #FollowtheChild event at the House of Commons on January 31st alongside six charities such as Clic Sargent and Teenage Cancer Trust. They want MPs to change their opinions to give families the choice about their child’s end of life care.
Sacha’s book is called Follow the Child and can be found here.
You can also follow the journey to the House of Commons by following the hashtag #FollowtheChild on Twitter.