Supporting families with their fight against children’s cancer

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It may surprise you to know that the Yorkshire Air Ambulance Charity relies on the generosity of individuals and organisations to help save lives across Yorkshire.

In fact as a Charity we only receive help through secondment of paramedics from the NHS, through Yorkshire Ambulance Service NHS Trust.  To keep both of Yorkshire’s air ambulances in the air we need to raise £12,000 per day. To find out more about our partnership with Yorkshire Ambulance Service NHS Trust, please click here.

This is equivalent to £4.4 million per year. As a rapid response air emergency service the Charity serves a population of approximately 5 million people across 4 million acres. Our two Air Ambulances operate from The Nostell Priory Estate near Wakefield and RAF Topcliffe near Thirsk, and together both Air Ambulances cover the whole of the region. To find out more about our Nostell Air Support Unit, visit this page, and to see more about our Topcliffe Air Support Unit, pleaseclick here.

The aim of Martin House is to provide family led care for children with life-limiting conditions. It is a place where children, young people and their families can come to stay from time to time along their journey and find support, rest and practical help. It is a place of love and understanding, a peaceful place but one that can also have a lively, friendly atmosphere full of fun and laughter, where children and their families can enjoy the best quality of life.

A proportion of children might use the hospice for a relatively short time, for example if they have a malignant disease such as cancer, where palliation is a treatment option. Others have longer term progressive disorders such as Spinal Muscular Atrophy or Duchenne Muscular Dystrophy, or a metabolic diseases such as Batten’s. These children might use the hospice over a much longer period of time.

Our role is to ensure that in everything we do, we place the family at the centre and value each member of the family as individuals with their own needs.

We acknowledge and respect the expertise of the parents as the main carers of their ill child. We recognise the prime importance of listening to the children, young people and their families and we help them to make well informed choices about care, treatment and end of life issues.

We always strive to be as flexible as possible and adapt to the needs of the individual child and their family. To this end, we have accommodation for both parents and siblings so that the family can choose to stay with their child, depending on their individual circumstances.

 

OSCAR’s (Ongoing, Support, Care And Research into) Paediatric Brain Tumour Charity was formed in November 2014 by the parents and friends of Oscar Hughes, a 9 year old boy who died of a Medulloblastoma (a brain tumour) in May 2014.

Oscar was a sporty and energetic 8 year old when he was first diagnosed. His motto was “A day without training is a day without meaning”. As he went through treatment he put all his energy into staying strong for his siblings and friends, as well as fundraising for other children with cancer. In particularly he raised over £6K through a marathon relay in which he himself took part at a time when even walking was a challenge.

The journey Oscar went on for a year to try and be free of cancer was both heartbreaking and inspiring to see. The treatments involved to fight brain tumours have devastating effects on a young body and mind. This is unacceptable and the only way to change this is by researching these cancers and find better treatments.

The charity aims to fund critical research into paediatric brain tumours with the hope to find a cure and less devastating treatments and works closely with other charities.

Find out more about PKD

ADPKD – AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE – is the world’s most common inherited kidney disease, in which fluid-filled cysts develop, multiply and grow in both kidneys. Other organs, such as the liver and brain, may be affected. Between 1 in 400 and 1 in 1000 people worldwide – about 12.5 million – have ADPKD. Over half of those affected will have kidney failure by the time they are 60 years old. Many will experience regular pain, disabiity and anxiety throughout life. If someone has ADPKD, there is a 1 in 2 (50 percent) likelihood that the disease will pass to each child born. Read more about ADPKD. ARPKD – AUTOSOMAL RECESSIVE POLYCYSTIC KIDNEY DISEASE – is a rare disease that affects the kidneys and liver. It occurs in about one in every 20,000 live births in the UK. ARPKD is a severe disease. Sadly, about one baby in three with ARPKD dies from breathing problems during the first four weeks after birth and some will die during pregnancy. However, 8 to 9 in ten babies (80-90 per cent) who survive the first four weeks of life are still alive at five years old. Encouragingly, a good number of children  now survive into adulthood and are able to live full and productive lives. Read more about ARPKD.

 

Jessie’s Fund was founded in memory of a little girl who died from a brain tumour at the age of 9. We have established posts for music therapists in the majority of the UK’s 43 hospices for children; most of the children we help can’t speak, so music can be a vital means of communication. Through our Soundtracks progamme children in special schools get the chance to participate in music, make recordings and perform, and we train staff in simple techniques for increasing musical activity in schools. https://www.facebook.com/JessiesFund.uk/