Kilkenny sisters' epic Everest climb for their brave 'Mam' who defied Multiple System Atrophy

Sisters, Julie Anne and Marie Bowden are planning a trip of a lifetime that is also a personal mission. They are going to climb to the base camp of Everest between November 11 and 25  to fundraise in memory of their mother Kitty Bowden who died from Multiple System Atrophy in September this year. They will also be accompanied by their first cousin Marian Holohan, so it is a real family affair. 

Multiple System Atrophy is a very rare condition of the nervous system which affects balance, movement and autonomic nervous system functions including breathing, digestion and bladder control. People with MSA have issues with coordination balance and speech so can appear clumsy and unsteady with slurred speech. It is an aggressive condition with the general prognosis for survival only six to nine years. 

But Kitty Bowden defied medical expectations and lived for 19 years after diagnosis with MSA in 2003. The fighting spirit that she displayed  living with the illness for two decades, has obviously been inherited by her daughters as they are determined to do their Everest trek despite the intense grief they are still feeling for their mother.  

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The sisters have a Just Giving page, KB’s Everest Base Camp where they hope to raise a target of €20,000 - they are currently at €4643. They hope that their fundraising will ensure that the MSA Trust is always available to support patients and families during difficult times while also funding research about the rare condition. 

Julie Anne Bowden says, “We’re very aware that every day people are struggling at the moment. So we don’t want to put pressure on everyday people.”

Marie Bowden explains that corporate sponsors would be ideal: “We’d love to target maybe if there’s companies in Kilkenny that wanted to sponsor us and as Julie Anne says we could take that approach.” 

She adds, “It’s going to be very hard to reach a €20,000 target with just going direct to the community. In saying that, people have been very generous.”

Every time the sisters talk about their mother their eyes well up with emotion. But despite feeling so raw, they are keen to talk about the amazing woman who was their mother. Kitty’s long years spent living with MSA marked their lives profoundly and they see this Everest trek not only as a fundraising effort but also as a tribute to her. 

Julie Anne says of Kitty: “At the time of diagnosis in 2003 … it was seen as quite progressive and she was given only a very short time, probably only a year to live at that time. So it was even more astounding then that she lived for 19 years after that.

 “There’s no cure. There’s no treatment so when you get the diagnosis, you’re told, ‘Well actually, there’s no medication we can give you, there’s no treatment. It’s progressive. You’re going to get worse and worse…. There is nothing to slow the progression’.”

For the Bowden family, suddenly everything was thrown upside down. Julie Anne says: “It’s uncertain so there’s no definite path.” 

Despite such an overwhelming situation Kitty Bowden was determined to live her life. 

Julie Anne recalls: “She had an extraordinary fight to live during her illness. She would say to me, ‘When are they going to find a cure for this?’ She didn’t want to give up and die and she continued to fight amazingly, inspiringly I suppose, right to the very end.”

Marie agrees: “To her last days - she was not ready to go. She wanted to stay with us to the  very end. She just had this incredible desire to live.” 

Julie Anne remembers that their Mum’s doctor once said, “ Read the medical textbook and then throw it away. She defies all logic.” 

The whole family had to adjust their lives to cope with Kitty’s illness but Marie says: “We made the situation work around our lives.” 

Their father ‘Haulie’ learned to cook and was a devoted carer for his wife for 20 years. To facilitate this, their brother Pat took on running the family farm.

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Julie Anne remembers that  Kitty remained at the centre of family life: “She was in the centre of everything …. And that I think is very much a part of keeping her alive.”  

The family also had a team of devoted carers who were central to their mother’s well-being. Julie Ann simply says of them:  “They became part of the family.” 

Quite quickly Kitty had lost her voice and was in a wheelchair at an early stage, but she still did as much as she could.  She went shopping and to mass. She even went to a wedding and to see Daniel O’Donnell, as she was a big music lover.  

She still communicated via a colour coded board and with her eyes.

Marie recalls: “ Mam’s eyes could speak a thousand words. She had the look when she wasn’t happy with you and weren’t doing what she wanted - you could tell straight away.”

Currently, the sisters are very busy prepping for the trip; training hard, seeking sponsorship and getting their kit together. They will be wearing three layers on the climb (a merino base layer, a mid layer and a top layer of a down jacket). Their special climbing boots have been bought one size up to accommodate layers of socks.    

They are excited at the prospect of the adventure too. Marie says: “It was something we had planned to do for a while. It gives us a focus and now it’s really kind of driving us on and because it's so fresh in our minds we really want to raise the awareness, raise the funds and she’ll be with us every step of the way as well. Maybe we’re trying to fill the gap a little bit.” 

Julie Anne agrees: “ If some of these funds can make a difference to at least even one other person’s life, who has got the unfortunate diagnosis of MSA, then it’s worth  it.”

https://www.justgiving.com/fundraising/multiple-system-atrophy-bowden-ebc-trek