Sunday, April 10, 2016

Little Girl in Need, Transplant Family, Run for PKD

Hoping for a Gift

From The Journal, Ireland

6-year-old girl needs a new kidney and liver to survive

Lexi Murphy with her mother Kim at the Little Mix concert 30.3.16 (1)

Lexi and her mother at the Little Mix concert

LEXI MURPHY IS just a normal six-year-old girl.

She attends school, goes to ballet classes and Irish dancing and last week she went to see her favourite group Little Mix perform at the 3 Arena.

But the difference between Lexi and other girls her age is that she needs a new liver and kidney.

This is because when she was just three weeks old Lexi was diagnosed with a rare, life-threatening condition.

She suffers from polycystic kidney disease – which also affects her liver.

She was put on the liver and kidney transplant list on 1 December 2015. But since then she has had to be suspended from it on six occasions when she became too ill and had to be hospitalised.

“In the blink of an eye Lexi can become really sick but she just gets on with it and hardly ever complains even when she receives her nightly injections,” said her mother Kim.

To help support the family, Kim’s parents Mary and Denis O’Sullivan sold their family home in Mallow, Co Cork and moved to be near Lexi and the family in Dunhill, Co Waterford.

This is to ensure that they can be on hand to mind Lexi’s siblings when she has to go for her operation.

When a suitable donor becomes available, Lexi will have to travel to Birmingham to have the combined transplant operation – as procedures like this aren’t carried out in Ireland.

Lexi’s mother is calling on people to become organ donors so that they could be able to support those in need after the die.

“One of the most difficult things for myself and my husband to come to terms with is that we are entirely reliant on family somewhere to make the selfless decision to donate organs at a time of huge grief,” said Kim.

The Irish Kidney Association are highlighting Lexi’s case in a bid to get more people to sign up as organ donors.

Around 550 people in Ireland are awaiting heart, lung, liver, kidney and pancreas transplants. 250 transplants in total were carried out in 2015 across Beaumont, Mater and St Vincent’s hospitals.

Organ donor cards can be obtained through the Irish Kidney Association. Freetext the word DONOR to 50050. For more info visit http://www.ika.ie/



PKD Awareness

From The Plymouth Herald, United Kingdom, by Sarah Herald

Plymouth mum diagnosed with rare kidney disease will run 13 miles to inspire others




A courageous mum who was told her kidneys could stop working thanks to an incurable condition will be running the Plymouth Half Marathon to encourage others "to get on with their lives and do good things".

Kelly Davis was diagnosed with autosomal dominant polycystic kidney disease five years ago – a genetic disease that causes cysts to develop in the kidneys.

But for the 35-year-old mum of two, the condition could result in kidney failure and the need for her to have a transplant in the near future.

Refusing to let this distressing news affect her day-to-day life, Kelly is now determined to do something positive and inspire others to do the same.

"You've got two ways of looking at things," said Kelly, who works at Plymouth University as a lecturer in education, "you can either get depressed and become despondent, or get on with things and encourage and inspire other people to get on with their lives and do good things.

"I want to encourage people to keep going even when they have difficult things to deal with, and turn negatives into some kind of positive."

Running is not something Kelly has ever enjoyed, however, and the prospect of slogging 13 miles across the city is particularly daunting for her.

"Up until about four weeks ago I absolutely hated running," she admitted, "however this has changed dramatically through my training and I am really starting to enjoy it."

Kelly, who lives in Plymouth with her husband, Eric, and her two young children, has been working herself up to longer distances in preparation for the race later this month.

Kelly will be raising money for Kidney Research UK in the hope one day a cure will be found for the condition.

Talking about the disease, Kelly said: "About five years ago now I was diagnosed with autosomal dominant polycystic kidney disease, a genetic kidney disease whereby your kidneys become filled with cysts and eventually affect the functioning of your kidneys.

"More recently I underwent genetic testing and found that I have type one, which is usually earlier onset in terms of its progression.

"Effectively my kidneys may eventually stop working so well, and I will probably need some assistance, maybe dialysis or even a transplant, but we remain super positive, as some people end up not requiring this level of intervention and their kidneys continue to work ok."

Kelly will be running with a group of other new mums during the half marathon, and she has already smashed her target of £300.

"This isn't about me being brave," she added, "but it's really important for people who do have the disease and think they don't have anyone to talk to about it to realise there are lots of people out there who are experiencing this and getting on with life and still being happy.

"Eventually I would like to run the London Marathon but I will need about a year or two of training, as it's hard fitting it around two children!"

If you would like to donate visit www.justgiving.com/Kellymariedavis



Gift of Life

From Sunday Express, United Kingdom, by Paul Jeeves

Three sisters and dad have life-saving transplants after being struck by kidney disease


THREE sisters and their father are celebrating their very special “gift of life” following life-saving transplants after all were struck by hereditary kidney disease.

Caron Waugh and her family



Caron Waugh, 46, became the latest member of her family to have a kidney transplant after father, Stuart Farmery, 69, and sisters, Andrea Reavill, 47, and Joanne Shepherd, 43.

The family all suffered from polycystic kidney disease but are so grateful that they have been given a second chance to live that they are urging people to consider donating their organs to help others facing the same predicament.

Stuart, of Holton-le-Clay near Grimsby, was first diagnosed with the disease in 1968 and his condition deteriorated leaving him needing dialysis in 1988.

He had a transplant at St James’ Hospital, Leeds, in October 1989.

Andrea, a teaching assistant also from Holton le Clay had her transplant in February 2007 while Joanne, who works as a practice nurse at a village surgery in Hampshire, underwent surgery in May 2014.

The kidney was a ‘live donation’ from a work colleague, who was tested and found to be a match.

Caron, from Holton le Clay, had her transplant on March 17 this year.

All three had been diagnosed at earlier ages before going on dialysis when the symptoms increased, as they waited for transplants. [Read more]

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