Charity: Rare Spinal Cord Tumour #JustGiving #Charity #SpinalCord #Tumour

On the eve of this New Year I am donating to Emily Parson’s Just Giving Page, please share widely and donate. This is such a sad story but one that speaks volumes of Emily’s courage and kindness.

Emily’s plight was brought to my attention by an old friend of mine and by my youngest daughter who has also heard about Emily. I’m donating to Emily Parsons just giving page. Please share this and consider donating to her JustGiving page too, the details of which are below. What a beautiful, kind-hearted person. Her family must be so proud. She is raising money to fund research into her incurable spinal cord tumour to help other young people like herself. She is only 22, bless her. Sending love and hugs to her and her family. x

Emily’s Story in her own words

Just after my 22nd birthday, I was diagnosed with a rare, highly aggressive, malignant and currently incurable, spinal cord tumour (Diffuse Midline Glioma, H3 K27M Mutation). Within just 5 weeks following diagnosis, I was given the prognosis that I have limited time to live.

There are less than 100 people diagnosed with this type of tumour in the UK each year, all of them will be between the ages of 3 to 25 years old and sadly all of them will die. The tumour grows rapidly within the Central Nervous System and has a devastating impact either on the spinal cord or the brain.


There have been no advances in treatment for this type of tumour for over 40 years. This needs to change so that other people and their loved ones face a more positive future and my real hope is that a cure can be found one day. In view of the rarity of the disease, there is limited information available which myself and my family have found difficult.

With the help of those around me, I have decided to set up this page to raise money to support a research project currently taking place within the Cancer Research UK’s (CRUK) Children’s Brain Tumour Centre of Excellence at Addenbrookes Hospital in Cambridge. This innovative research project has been jointly funded by CRUK, Great Ormond Street Hospital and Brain Research UK. The research is specifically studying tumours in the Central Nervous System in children and young adults with this rare mutation to identify targeted treatment options for the future. This particular research project is close to my heart because of its relevance to my specific type of tumour, it’s based at Addenbrookes where I have received treatment, and also with my love of children and my future aspirations to have been a primary school teacher it feels like a perfect fit.


In addition, I would like to share with you that whilst I knew there was something wrong, it took multiple GP appointments across several months before I was finally referred to a specialist. I know that for my cancer an early diagnosis would have been highly unlikely to make a difference to my prognosis, but for other cancers it could. We all know our own bodies, so no matter what your age, if something doesn’t feel right, don’t delay seeking professional advice, and don’t give up until someone listens to you.


I would really appreciate it if you could show your support by donating to and sharing
this page.
Thank you,
Emily x

Emily’s Crowdfunding Page: https://www.justgiving.com/crowdfunding/emily-parsons

Colleen’s Weekly #Poetry Challenge # 35 – PAST & FUTURE

052217_1924_colleenswee1

I had a disturbed sleep last night waking up at 5am. I managed to get back to sleep and awoke again at 7am. I checked my twitter feed  and discovered the horrifying news about the terrorist attack in Manchester. I cried. I couldn’t cope with the sad news about another attack especially one which struck at our young people. This is cruel, beyond comprehension.  I contemplated the morning and realised how beautiful a day it was. A single bird remained atop a tree, not moving so I picked up my mobile phone and captured it. Seconds later it flew away. If only those young people could have flown away. If only that man hadn’t done what he did.

unnamed (17)

How ironic. The sun shone, but how could this be? How are we to continue when such atrocities happen? I suppose the answer is we have no choice; we have to, or the terrorists will win. So, I wiped my tears and tried to do something positive. I went for a walk. I hadn’t planned to take photos, but I did.   I’m sharing these at the end of my post, as a way to heal heartache. Life has to go on, but sometimes (being a parent,) you can’t help but feel the pain of such a devastating loss. To lose a child. This shouldn’t happen. Ever.

So today I am dedicating my Tanka to all the youngsters who lost their lives in Manchester, to their families and friends and to those who are still missing. My thoughts and prayers are with you.

It's NationalBourbon Day! (1)

 

This is in response to Colleen’s challenge: https://colleenchesebro.com/2017/05/23/colleens-weekly-poetry-challenge-35-past-future/

Here are my photos of Emmaus, a charity for the homeless near me. It’s a great place to go to for a cup of tea and cake. There is a garden, ample parking places and everything you buy goes towards helping the homeless. I bought several new mugs, and a couple of other things, and snapped photos of their recycled art sculptures, their hens roaming in the garden, bee area, and several quirky bits and pieces. It helped. A little.

This slideshow requires JavaScript.

Take care, stay safe.

85978B3EEB2A2F45468E6707CEAFE70D