Friday, 28 July 2017

National Deaf Children's Society





I first met Abigail when I was 10 years old.  She is the final part of the 'stable gang' puzzle (with Beth and Kate) with whom I have been 'doing' life for the last 30 years.   

From pretending to be a police officer rolling across car parks and hiding behind cars shouting 'cover me', Abigail went on to become a fully fledged police officer, with the Mounted Section in the early days and later moving on to the Armed Response team.  We're all really proud and grateful to Abigail for choosing to spend her life serving others. 

Abigail's family featured throughout much of my childhood and it has been wonderful to still know them 30 years later.  Abigail's brother Alex has agreed to write this blog post outlining why the National Deaf Children's Society is on the fortycubed list of charities and how much of a support the organisation has been to him and his family.

 

Alex and Natalie's story


'The National Deaf Children's Society is a national charity dedicated to creating what they call 'a world without barriers' for deaf children and young people, of which there are over 45,000 in the UK, two of whom I am lucky enough to call my daughters.

The personal bit...

I am the carrier of a gene defect, along with just less than 1% of the population, that has the potential to stop hairs in the inner ear transmit sound.  My wife, by chance also happens to carry the same gene.  This means that there was always a one in four chance that we as a couple would both pass on the gene defect and our children would have hearing loss.  That is exactly what happened for our first two daughters, Violet and Florence.

When Violet was diagnosed as deaf it was very tough.  All of a sudden the future for our 5 year old daughter was not so clear.  Could she stay in mainstream education? Would we be able to communicate with her?  What was 'wrong' with her?

That was when we went on the NDCS 'Newly Diagnosed' weekend, which proved to be a turning point for us.  At a very vulnerable time they educated us, made us feel supported and as a family, helped us look to the future.  For this we will always be grateful and hope that other families of deaf children get the benefit of the support that we did.'

The charity bit...

The National Deaf Children's Society was founded in London on 15 December 1944 by a handful of parents of deaf children concerned about the impact of the 1944 Education Act on their schooling.  To this day, their vision and values reflect the fact that they remain essentially a parents' organisation, dedicated to the needs of all deaf children, their families and carers.  They provide a seamless service supporting families with deaf children from birth to 25.

NDCS offers help to deaf children and their families through:

  • Educating them on the support available 
  • Giving advice on schooling and ensuring ongoing support within school
  • Emotional support at the time of diagnosis
  • Providing a manned helpline advising on health, social care, discrimination and communication 
  • Helping with advice on technology and how to access it 
  • Organising a range of social and networking events for children and their families 

 Facts you should know... 

  • There are over 45,000 deaf children living in the UK
  • 90% of deaf children are born to hearing parents with little or no experience of deafness or knowledge of how to communicate with a deaf person
  • Four babies are born deaf in the UK every day
  • 40% of deaf children have additional needs
  • 57% of deaf children failed to achieve 5 GCSEs at grades A* to C in 2013 compared to 30% of other children
  • Without the right support, deaf children and young people are vulnerable to isolation, abuse, bullying, poor self-esteem and low levels of achievement. 
  • Research suggests that more than 77% of school-aged deaf children in the UK attend mainstream schools where there is no specialist provision and in which they may be the only deaf child enrolled

Deafness is not learning disability


There is no reason why the majority of deaf children should achieve any less than hearing children.  Deaf children need to be able to communicate effectively, access information and the influence the world around them by any appropriate method be it sign language, oral communication or a combination of approaches.  

NDCS and fortycubed

Abigail will be hosting a table for NDCS at the Gala Dinner in October.  If you would like to make a donation to the charity please follow this link.  For more information on the charity please visit the website.


Monday, 24 July 2017

Are you TSS Aware?





For the last few years I have attended the Cherish Conference held in Leeds Arena.  The Cherish Foundation honours two women each year who have 'displayed tremendous courage, determination and dignity through adversity'.  All of the recipients of the Foundation awards are exceptional but Mandy Scott's story and passion to spread awareness of Toxic Shock Syndrome laid heavily on my heart as I left the conference and headed back home to my own daughters.

Prompted by personal tragedy, Mandy and her family have dedicated themselves to spreading awareness through TSS Aware since the death of her daughter Natasha at just 14 years old.

Natasha's story 


'Natasha died of Toxic Shock Syndrome the first time that she used Tampons, however, her symptoms were mistakenly diagnosed as the Norovirus. Generally speaking it is accepted knowledge that leaving a tampon in for too long can cause Toxic Shock Syndrome. In Natasha’s case, she followed all of the instructions and used the tampon correctly; it was simply the introduction of the tampon into her body which caused Toxic Shock Syndrome to take effect.


                                     

Toxic shock syndrome is very rare, but also very deadly.  Natasha became ill five days before she died but remained in good spirits, and only the evening before she died, she was telling Mandy off for fussing over her, and saying that she was feeling much better.

She died peacefully at approximately 6:45am on Valentine’s Day 2013 after falling asleep watching one of her favourite TV programmes.

We cannot express how much we miss our beautiful, gifted, kind and funny Natasha. All of our family, and many others close to us, are still reeling from the shock of losing our wonderful girl. We hope that you and your family never have to go through what we have gone through and are still going through.'

 

The symptoms 

 

Toxic Shock Syndrome can kill in just days.  If you develop two or more of these symptoms after or whilst using a tampon speak to your doctor:

Vomiting
Diarrhoea
Fainting
Aches
Dizziness
Confusion
High Temperature
Sunburn-like rash

*TSS is also associated with burns,scalds, boils, insect bites and surgery

You can find our more about Toxic Shock Syndrome and the work of TSS Aware on their website. 

A positive legacy for Natasha

Natasha had visited East Africa and been involved with building homes for orphans in Uganda, and had spent many a happy hour cuddling and playing with the children there.

Natasha’s family had heard of FISCH (Future for Iringa Street Children) and its activities in Iringa, Tanzania and have since been raising funds for a drop-in-centre for FISCH that would become Natasha’s legacy.

Fortycubed will be promoting the work and message of TSS Aware over the next year while raising funds towards the drop-in centre.

Saturday, 15 July 2017

NET Patient Foundation


When I first met Caroline she was preparing for her eldest child to start school.  She was warm and smiley but her heart was heavy.  Even in those early moments of conversation, her brother and his terminal cancer diagnosis took centre stage.  

What are NETs?




A neuroendocrine tumour (NET) is a rare tumour that develops from cells of the neuroendocrine system. The neuroendocrine system is made up of cells that are similar to nerve cells and make hormones.  Neuroendocrine cells are found throughout the body in organs such as the stomach, bowel and lungs.  NETs can be non-cancerous (benign) or cancerous (malignant). 

NETs are classified according to where the cancer started (the primary tumour). For example:
  • small bowel NETs
  • large bowel NETs
  • appendiceal NETs
  • pancreatic NETs
  • gastric NETs
  • lung NETs.
 
Rarely, NETs occur in other areas, including the liver, gallbladder, bile ducts, kidneys, ovaries or testicles.  NETs often grow slowly. It may be several years before symptoms appear and the tumour is diagnosed. However, some NETs are faster growing and more likely to spread to surrounding tissues and other parts of the body.

Caroline's story

'I loved my brother immensely.  At 16 years my senior he was always very protective of me and also very kind and generous to other people. I looked up to him and learned a lot from him.  When our dad had a stroke, I was ready to take on the role of caring for him.  However, Stephen stepped in as he wanted me to have time to look after my new baby. 

It was at our dad's 70th birthday celebration that I could tell Stephen was unwell.  He didn't eat very much which was totally out of character and said that he had a stomach bug.

In reality, Stephen had been experiencing recurrent stomach pains over some months and had been feeling really tired.  He was originally diagnosed with a stomach ulcer.  However, an MRI scan revealed Stephen was riddled with cancer and the consultants were never able to identify the primary source of the cancer which made a treatment plan more complicated.  

I started searching the Internet for stories of miraculous treatments and as much information as I could find about this very rare cancer.  The only page I found was the Net Patient Foundation and when I spoke to Stephen, he also had ended up focusing on that one website.  The information was a lifeline for us and the website is even better now.  

Stephen wanted to be treated normally throughout his treatment and kept his wonderful sense of humour throughout. He had lived for some time in Germany in the RAF and when I visited him in the November before he died I took him a collection of German treats that he loved such as bratwurst and biscuits.  He really shouldn't have been eating this type of food and he knew he would feel unwell later but said to me 'what's the difference?  I'm dying anyway!'  We had such a great time that Bonfire night as we reminisced about Germany and Stephen lit fireworks even though he was in a very frail state.


Even when he was terminally ill he was thinking of others.  He had just finished building their conservatory when he became ill.  He went on to manage massive home improvements in the year before he died to remove as many worries as possible for his family.  This included replacing the kitchen, the windows and doors, the garage door and all the carpets.  He wanted to deal with all the work in order to lift a potential future burden from his wife.

Stephen tried not to show or to talk about his pain and suffering as he knew it was tough for all of us as we helplessly watched him deteriorate.  Stephen died in the following February, the day before World Cancer Day.  I will always be so proud to call Stephen my big brother.  He was an inspiration.'

What can we do?

The NET Patient Foundation is the only charity in the UK & Ireland dedicated to providing support and information to people affected by neuroendocrine cancers. The NET Patient Foundation was formed at the start of 2006 so is a fairly young charity.  If you would like to find out more about NET Patient Foundation please look at their website.  Caroline will be hosting a table at the fortycubed Gala Dinner in October but if you like to make a donation directly to the charity please follow this link.









Monday, 3 July 2017

We Won't Stop

 

'The strongest person in the world is a grieving mother that wakes up and keeps going every day'

Tara Watkins Anderson

  

Edith is my new hero.  We've never met but her granddaughter is quite rightly proud of everything she has achieved and the impact her dedication and hard work has had on so many others.  

Her granddaughter Sarah is one of the 'Blister Sisters', who recently completed a 26 mile walk in scorching heat to raise funds for Bloodwise.  While on a less challenging walk she had mentioned to me that her family had a link to the charity Bloodwise which is one of the reasons Bloodwise was put on the fortycubed 40 charities list.

Edith - the story so far

The daughter of a war hero, Edith was faced with her father's early death from TB when she was just 15 years old and then worked hard to help her mother manage the emotional and financial burden of single parenthood. Edith met Laurie at the local cinema just before the outbreak of World War II.  They married in December 1942 and put their names down for a council house, for which they eventually waited for 7 years and 6 months! Edith left work in 1944 to have a baby but heartbreakingly, the baby was stillborn.  

The couple were blessed with two more children, Rosemary Ann in 1947 and John Richard in March 1949.  But Edith's heartache continued as John became unwell in 1958 at just 9 years old. 


'John was such a happy boy.  He loved being outside playing football.  This was his passion and he was so good that Arsenal were looking for him to join their academy.  John became unwell and spent several weeks in the local hospital before being moved to Great Ormond Street Children's Hospital and was diagnosed as having Leukaemia.  I was devastated; my world crumbled.  John died on 2nd June 1959.  I was hurt so much.  I will never really get over it.'

Despite having Laurie and 12 year old Rosemary at home, Edith found the family home so empty and her heart ached.  A doctor advised her to have another baby but given her obstetric history and age, Edith and Laurie chose instead to adopt.  Adrian Michael joined the family in May 1960 and brought much needed joy into the home. 

Rosemary and Adrian went on to have careers that put others before themselves.  Rosemary trained as a nurse at Great Ormond Street Hospital at Tadworth.  Adrian started out caring for people in a mental hospital before joining the London Fire Brigade.

At the time of John's death there was no treatment for Leukaemia and no Leukaemia research.  The specialist at Great Ormond Street advised that the average span of the disease was just 9 months.  John became unwell in September 1958 and died in June 1959.  One Tuesday he was playing cricket.  The following Tuesday he passed away. 

 

Bloodwise

Shortly afterwards, Edith and Laurie read that a doctor at Great Ormond Street had advised a grieving parent to go back home to Middlesbrough and raise £5,000 for a research unit. Laurie contacted this parent and the Radlett branch of Leukaemia Research was born.

Edith and Laurie got stuck straight into fundraising even before the group was officially registered.  Edith made and sold aprons; the couple ran jumble sales and bazaars; Laurie ran a raffle every week at work until he retired.  Edith has never stepped back from her fundraising role and the Radlett and Borehamwood branch (as it is now known) has raised over £236,000.  Edith has worked tirelessly for Bloodwise so that other people can be spared the pain of losing someone they love to Leukaemia and continues to do so at 97 years old!

Bloodwise funds world-class research and offers expert information and support to anyone affected by leukaemia, lymphoma, myeloma and other blood cancer related disorders.  

Once you have read Edith's story, two straplines stand out from the Bloodwise website - 'Beating blood cancer since 1960' and 'We won't stop until we've beaten blood cancer'.  Now they have more meaning.  It was because of grieving parents taking action in 1960 that doctors have made so much progress in treatments for Leukaemia today.  And like the website says, Edith will never stop fundraising and campaigning for the charity.  If you wish to donate to Bloodwise you can do so via this link.

Thank you Edith and Laurie.  Thank you for rising up and taking a stand against cancer in the midst of your own personal grief. You have made a difference to our world.

Sarah (Edith's granddaughter) and friend Sue following in Edith's footsteps