Please join me in sponsorship as I walk across England in support of the Ryan Stanford Appeal.   I will be taking out my walking boots and traversing the hilly terrain of the English Lake District, Yorkshire Dales, and North York Moors on the Wainwright Coast to Coast walk.

This walk is being undertaken in loving memory of my beautiful nieces.  Neve Seeley died from Alpers Syndrome, a fatal mitochondrial disease, 9days before her 2nd birthday in June 2010 and sadly her sister who was just weeks old when Neve first became ill was diagnosed with the same condition and left us on 23rd March 2011- just before her 1st birthday.  

Many of us are lucky to see our children grow up, for a family to loose a child is devastating,  two children is beyond comprehension.  Please sponsor me so we can raise additional funds in support of Alpers research with the hope that treatment can be found and one day even a cure.  

I will be joined by a Neve & Reece's mum Sam for the whole walk and a few others have confirmed they also will join us for a few days...

We will be setting out on this epic journey on the 2nd anniversary of Neve's death:  June 15th 2012.   We had hoped to complete this  on what would have been Neve's 4th birthday - 24th June 2012, however are now breaking this challenge into two parts:-

Part one: Setting off Thursday 14th to Start the walk on June 15th 2012.  Walking half way - retuning on Wednesday evening 20th June.   (blog:- http://samandjanesc2c.blogspot.co.uk)

Part two:  2013....  With my knee repaired... I am in training in preparation to take on part two during 2013... further updates when date is set... Planned for sometime between June-Sept .

Please provide support  by sponsoring the miles we  will walk, the blisters we will get, the rain we will endure and the falling into bed that we will do.   As we count the miles, it will be great to know that each new mile brings a new pound, dollar or euro to such a worthy cause! For those that know me - this will be a challenge... high heels off and walking boots, backpack + packets of plasters at the ready...

COAST TO COAST:

c220miles.  From sea level to the highest point of Kidsty Pike at 2,560!   The mountains are rugged with steep footpaths, the terrain is a diversity of rocky mountain paths, limestone plateau’s, country lanes, rolling hillsides and farmland.

The route begins in West Cumbria, on the shores of the Irish Sea at St Bees. The route then crosses the coastal plain, the Lake District, the Pennines and the North York Moors, and ends on the North Sea coast at Robin Hood's Bay in Yorkshire.

more about the walk: www.wainwright.org.uk/coasttocoast.html

 

WHAT IS ALPERS SYNDROME?:

Alpers’ Syndrome is a disease of the brain and liver. There are 3 classical symptoms of Alpers’ Syndrome. These are: 1) seizures that are very difficult to treat and have a focal component, 2) episodic psychomotor regression or dementia (loss of developmental milestones, often associated with common childhood infections),
3) liver disease. The children are born and develop normally for a period of time in virtually every case. Symptoms begin between the first few weeks of life and about 25 years of age. Two-thirds of the cases begin to show symptoms of seizures, or episodic loss of developmental milestones, within the first 2 years of life.

Alpers’ Syndrome is a recessive genetic disease with a frequency of about 1:250,000 live births. Many cases die before an accurate diagnosis is made, so the true frequency is still an estimate. Alpers is caused by inheriting two copies of the POLG gene that are dysfunctional. These are called mutant copies. The function of the POLG gene is to copy mitochondrial DNA. In Alpers’ Syndrome, POLG is defective, so after a period of time, the amount of mitochondrial DNA in the cell falls below a critical threshold of about 35% of normal. When this happens, the mitochondria become sick, and begin to misfire. This leads to the brain and liver disease of classical Alpers’ Syndrome.

The rarity of the disease means that it does not make headlines, which in turn means that it doesn't receive the public attention or research funding that it deserves. As a result, very little is known about it.

THE CHARITY:
The Ryan Stanford Appeal has been established to raise awareness of the disease and fund research into this terrible condition.  Future sufferers of Alpers' Syndrome might benefit greatly from treatments and remedies which haven't been discovered yet - with the help of kind donations and sponsorships we will be able to support the charity to fund medical research into Alper's Syndrome - a very rare, terminal condition generally found in young children.

JUST GIVING:
JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now - Thank you.

 

Off-line donations: 

Many thanks to John @ AblePower £100

Huge thank you for Rhiannon £2 from pocket money and now wearing 2x Alpers bands and helping me make sure I go for my walks daily while she is staying with us...

Thanks for Emily also £2 donated that she found ;0)

Terri Vallance-Brett £25

Sandra- Brown-Owl: £10