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In July 2013, our beautiful Alfie was diagnosed with a brain tumour at NGH. Alfie was then transferred straight to John Radcliffe, Oxford.
The following day, we were told the devastating news that our Alfie has a tumour of the brain stem called, Diffuse Intrinsic Pontine Glioma (DIPG).
DIPG is both inoperable and incurable. Every 9 days, another child will be diagnosed with DIPG in the UK. The median age at diagnosis is 5 to 10 years. It has a 0% survival rate.
Our Alfie is forever 6 years old. He has been lovingly referred to as 'Alfie bear' since he was just six months old. Alfie was a beautiful soul, and always had a big smile for everyone that he met.
He was very musical, and enjoyed playing the drums and guitar as well as singing at the top of his voice with his two older brothers, Tyronne and Ryan. When asked what he wanted to be when he grew up, Alfie replied "I want to be a rock star."
Alfie is our little hero. He was so brave through out his journey. Despite having to endure many hospital visits, procedures and treatments, Alfie done it all with a big smile on his face. He really was a fighter and a true inspiration to us all.
Alfie was continually on steroids since diagnosis, and finished a course of hypo fractioned radiotherapy on the 28th August. Following the radiotherapy, Alfie had six months practically symptom free, which meant we were able to make many more happy memories.
Unfortunately, the tumour grew and Alfie's symptoms returned at the beginning of March 2014, and within a week Alfie began his first course of chemotherapy.
Alfie did not cope well with his second course of Chemo, and on the 27th April 2014, Alfie became very ill. Later after his scan, we was told the devastating news that the tumour had progressed further which was causing swelling to his brain, and that nothing more could be done for our little boy.
Alfie was put on a higher dose of steroids to help relieve some of the pressure, and we brought our little boy home temporarily. His amazing Consultants helped us to care for Alfie and manage any symptoms he had.
Incredibly, Alfie was still smiling and laughing, and continued to make everyone around him smile too. We love the strength our Alfie Bear showed!
Sadly by the end of May, we saw a steady deterioration in Alfie's condition. His breathing had become a struggle and he was generally weak. This lead to our beautiful Alfie loosing the ability to swallow and to talk.
On the 1st of June, we took Alfie to Northants hospital where sadly his condition quickly deteriorated. On the 02nd June at 1.15 in the afternoon, our brave Alfie bear sadly passed away with Mummy and Daddy by his side.
Our Alfie bravely fought until the bitter end, a true inspiration to us all. Alfie is now free of DIPG and has earned his angel wings. We are incredibly proud of the strength and courage that our beautiful Alfie showed throughout his journey. He will always be our hero and his huge smile and beautiful spirit will live on in all our hearts. We and Alfie’s amazing big brothers Tyronne and Ryan, as well as all our extended family are completely devastated. The house feels empty but our hearts are full with love and pride for our little boy who brought so much love and laughter to our lives. Alfie Bear will always be remembered as the bravest little boy with the biggest smile.
Over £500 million a year is spent on cancer research in the UK. Less than 2% of this goes towards brain tumour research.
DIPG survival rates has not improved in over three decades. Research is extremely underfunded, which is another reason we are desperate to help. We will continue to spread awareness and to raise funds for vital research in memory of our Alfie and all DIPG Angels. As well as the children who are still fighting this cruel disease, and those who will be diagnosed in the future.
We chose to support 'The Brain Tumour Charity' because they do an amazing job in funding cutting edge research to find a cure for brain tumours, as well as raising awareness and providing support to those affected.
Thanks to the kindness of all our supporters, we have now passed our target of £50,000. We are overwhelmed by the support shown for our Alfie's Journey Fund and thank each and everyone of you that have helped us along the way.
We will continue to raise awareness and funds in memory of our Alfie Bear. Any help would be gratefully received.
Thank you for your support and for helping us to make a difference.
The Fight Goes On.....
Zoe & Danny (Alfie's Mummy & Daddy)
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