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Campaign launched to save Exeter mum suffering from one in seven billion double terminal illness

By Exeter Express and Echo  |  Posted: April 09, 2014

Jo Smith with son Rudey

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A CAMPAIGN has been launched to fund pioneering treatment for a mum suffering with a rare, one in seven billion, double terminal illness.

Jo Smith, 36, who grew up in Exeter but now lives in Broadhembury, near Honiton, was diagnosed with rare heart and lung disease, pulmonary hypertension, 11 months after giving birth to her son Rudey, now aged three.

Within months she was diagnosed with lymphatic cancer – and she is thought to be the only person in the world with both diseases.

Jo, a former Exeter College student, cannot undergo treatment for the cancer because of the risk to her heart and lungs which have been weakened due to the PH. Neither can she be put on a waiting list for a heart and lung transplant, because she has cancer.

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But there is a single ray of light. A doctor in Thailand is pioneering a type of immunotherapy treatment which could cure Jo’s cancer and also stop the advancement of the PH.

It is her one and only lifeline and she needs it as soon as possible.

Her best friend Sarah Lacey has launched the Breathe for Jo campaign to raise the £30,000 needed in 30 days.

Sarah and The Voice star and singer Adam Isaac, have also organised Breathe Fest, taking place at Northernhay Gardens on Friday, July 11, and Saturday, July 12. Funds raised will also go towards the campaign.

For those who know or meet Jo, it is hard to imagine that she is so ill. Because she has avoided chemotherapy, she still has her long, wavy hair – but far more remarkably, she has lost none of her positive outlook on life.

She was diagnosed with PH in December 2011 after going to her doctor because tiredness and lethargy had become so severe, in such a short space of time, she couldn’t walk up the stairs without gasping for breath.

Initial investigations also revealed a huge mass by her kidneys in her back.

The only option was to remove the tumour, but because of the immense strain the operation would put on Jo’s heart and lungs, she had a 50 per cent chance of dying.

For the sake of her son, it took her just over a year to finally resolve to undergo the operation in January 2013.

Then, the young mother suffered another devastating bombshell when subsequent tests revealed cancer.

Doctors wanted to prescribe her immediate radiotherapy, but her PH doctors vetoed their demand, because the strain of this gruelling treatment could kill her.

“The doctors weren’t expecting this, and I wasn’t expecting to hear this,” said Jo.

“I didn’t want to take any more risks, the operation was enough of a risk. If it was just me, I may have felt differently, but I’m a mum, I couldn’t compromise my survival.”

Unfortunately, rather than make her feel better, Jo’s health rapidly went downhill and now walking up the stairs, or picking up her son, is exhausting.

“We hoped the operation would at least have had some sort of positive impact on my PH,” she said.

“But if anything, the impact of such a massive operation made it worse.”

Jo said doctors are continually assessing both conditions to determine the next course of action.

“I’ve always been quite a positive person. I’ve never let it impact on my life, but it’s becoming impossible now – it’s starting to effect everything I do,” said Jo.

“It’s devastating, but I have to deal with it. I have little Rudey to take care of. He takes my mind off things.”

“I’ve only recently told him, I’ve had to tell him so he understands why I can’t run after him.”

He tries to care for me, he’s so sweet, he’ll come and give me a little pat on the back and stroke my hair and asks me when I’ll get better.”

The Breathe Fest line-up is already boasting dozens of eclectic bands from all over the country including Adam Isaac and his band.

The event is set to cost £10,000 and sponsors are being sought in earnest so maximum funds can go to the appeal. Anyone interested should email Sarah at sarah@ontrackmusic events.com

For more information about the event, visit the Breathe Fest Facebook page and to pledge your support visit the Breathe for Jo Facebook page.

A website is planned at www.breathefest.com and a Just Giving account should also be live within days.

Tickets and more information will also be available when the event website goes live soon, A website is planned at www.breathefest.com.


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