Mum of little boy with very rare lung disease launches campaign

There is a life support machine which is attached to a tracheostomy in Noah’s neck every night to keep him alive, there is resuscitation and suction equipment and all manner of monitors which will sound if he stops breathing.

His mum Jill Evans will then leap into action to help save her little boy’s life. Jill isn’t a qualified nurse, she is just a mum doing her best to keep her son alive.

She and her partner and Noah’s dad Colin are among thousands of parents caring for very poorly children at home and saving the NHS thousands of pounds.

“We try to keep Noah out of hospital as much as possible,” says Jill from Huddersfield.

“The only thing I can’t do is give him intravenous antibiotics. If he needs those hen he has to go into hospital into a high dependency unit which costs £1,000 a night. If I wasn’t here he would be in hospital a lot more.”

This week Jill working with the national charity WellChild, launched #NOTANURSE_BUT campaign in Yorkshire. She is calling for greater recognition and improved support for the high level of care currently provided at home by families with children and young people with serious illness and complex health needs.

“No one really knows how many people there are out there like us or what the gap in support for them is,” explains Jill. “We do physical support for Noah but one of us has to be here at all times as well. But there is very little emotional support.”

Noah suffers from a rare form of lung disease and was one of just 19 babies in the world to be diagnosed with the condition when he was two months old.

“Noah was delivered by emergency section at Halifax early as my waters broke and he went into distress. He weighed just 3lb 14oz and wasn’t breathing when he was born.”
Doctors manage to resuscitate him but over the new few weeks he repeatedly stopped breathing and turned blue.

“They just didn’t know what was wrong with him,” says Jill.

As there was no bed for Noah in Leeds he was transferred to Alderhay in Liverpool where he and his family would spend the best part of the first year of his life. “We thought we were just going for some tests but ended up staying nearly a year.”

Luckily both Jill and Colin worked for Colin’s graphic design business so they could take time off. But the following weeks and months became increasingly difficult as doctors struggled to diagnose what was wrong with him.

“He just kept stopping breathing and in the end they said that he needed a tracheostomy . It was something we wanted but the consultant said they couldn’t guarantee they could keep bringing him back and so we agreed.” When he was two month old doctors asked if they could perform on lung biopsy on Noah.

“They did warn us that he may not make it through the operation but we really didn’t have much choice.” The biopsy showed that Noah was suffering from a vary rare form of interstitial lung disease.

“It was so rare that he was one of only 19 babies in the world to have had the condition.” It meant that rather than expelling carbon monoxide, Noah retains it.

“A last we had a diagnosis so it meant that they could start treating him which was a relief.”

Noah was given medication normally used to fight malaria, but for some reason the side effects help some people with lung disease. After nearly a year in hospital the family was allowed home after receiving training and a care package of 110 hours agency support a week although Colin or Jill has to be there at all times.

“It was frightening,” says Jill. “Even now, and Noah is four, I don’t like to be left on my own with him. You can’t take your eyes of him. He can be fine and then all of a sudden he throws a wobbly, turns blue and stops breathing normally because his tracheotomy has got blocked.”

Jill and Colin have another son, three year old Oscar who is free from the condition.

“We were told it wasn’t genetic although I was the first person to have a baby after having a child with the condition and so it was nerve wracking. But I do feel sorry for Oscar. He doesn’t understand why he doesn’t get the one to one attention that Noah does.” The couple now run their own business a custom cycling and triathlon wear company called Raceskin as they need the flexibility this gives them to care for Noah, who has just started mainstream school, another concern for Jill who would prefer not to let him out of her sight. Jill often finds herself forced to administer painful but life-saving procedures to Noah.

“I hate it when he cries but I have to carry on anyway. I’m his mum and I should be comforting him but instead I am the nurse inflicting pain in order to help him. Moments like this and the relentless nature of his care can be so exhausting and emotionally draining. When we were in hospital I really benefitted from the counselling on offer. Now we are at home this sort of support is virtually impossible to access. At the moment we are coping but I think it is vital that people understand what happens behind closed doors of families like mine and the level of care we have to provide.”

Jill and Colin are encouraging others experiencing similar issues to use the #NOTANURSE_BUT campaign to share their experiences with the world and to voice their opinions on what changes would benefit them and others like them.

“Since having Noah my outlook on life has changed and I feel blessed every day that he is with us,” says Jill. “We try to get out as much as we can even though we have to take bags of equipment with us in case Noah stop breathing. He’s an amazing little boy who stays cheery even when he is feeling poorly.”