A mum realised something was seriously wrong with her newborn son when she was breastfeeding him.
Kara Dobbs spoke to the ECHO about how her life changed when her first born son Leo was given a devastating diagnosis.
When she was just 20, Kara said she had felt overlooked and unheard when she first took her baby to see doctors when he was two weeks old.
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She said: "The pregnancy and birth had been all normal and for the first two weeks he was breastfeeding fine.
"Then he started projectile vomiting, I was told it was colic. At four months, he was still very floppy while other babies that age could keep their heads up, I was told he was 'lazy'.
"But he kept having these spells of vomiting and started to lose weight. I took him to the doctors and felt that they didn't take any notice of me because I was young, in fact, some of the notes questioned my mothering skills."
After seeking out a second opinion Leo was given a blood test and scan which showed he had an enlarged heart.
At seven months old he was diagnosed with Infantile Pompe disease - a condition affecting only 25-30 children in the UK - which means sugars harmfully enlarge his vital organs.
It is a progressive condition that causes muscle weakness, lack of reflexes, difficulties breathing and swallowing and an enlarged tongue, liver and heart.
Kara, 28, said she had to become almost like a medical expert overnight as she tried to get her head around the diagnosis, treatments and the very short life expectancy of children with Pompe.
She said: "When they told me, my mind just went blank, I was kind of in and out of what she was saying.
"They were telling me all the time to 'prepare for the worst'.
"I said to myself 'what can we do now to make this situation better?' Because of the survival rate, many don't make it past five years old and the oldest is about 20 and they are severely disabled."
Kara had to leave her life in Birkenhead and move to Ronald McDonald House Children's Hospital in Manchester with Leo for three years.
She said: "I did this all on my own with no support. But very quickly the staff at the hospital became like a second family to me and Leo, they still are now.
"I couldn't take him home until his enzyme therapy had worked but he kept getting chest infections and when he was three he had a tracheostomy [opening created at the front of the neck to aid breathing] I just thought he would have no quality of life, because that is just what you think."
But Kara said she found the strength to make every day with Leo count and not let his condition get in the way of him "living his life".
Leo is now seven and is a social butterfly known for the odd eye roll with a bit of attitude according to his mum.
She said: "He goes everywhere, he has a better social life than me.
"He goes the zoo, museums, aquariums, art galleries, country walks, visits castles, swimming, the cinema, we even took him to a shooting range.
"While he is non-verbal and has limited movement, I want to make sure Leo experiences as much as he can and we make those memories together.
"We keep our own chickens, which Leo loves, and he loves it when you dance in front of him. And, sometimes, even though he can't eat it, he will wear a little chef's hat and I will help him chop vegetables."
And since moving back to Birkenhead from the hospital in Manchester, Kara and Leo's family have grown.
Kara is now married to Adam, 29, and has four more children, Willow, five, Ragnar, two, and step-children Seren, eight, and Xander, six.
She said: "We are a very unique household. Recently Leo's health has deteriorated and he has had to be resuscitated on a number of occasions.
"It is very traumatic. If he stops breathing I have to tell myself not to panic and remember my training.
"Leo's siblings sometimes come in and ask if he is OK and I have to say through the tears 'it's fine, just go out while I work on Leo'.
"I had to run down the road to get the defibrillator from the local train station recently.
"Often when the ambulance crew arrives I just break down in tears as they take over.
"So one minute it can all be calm and happy then that alarm goes off and we have to act."
Kara said worries over money had pushed her to get a job - she says it costs up to £200 a month in electricity to keep Leo's life support machine on - but she had to turn down employment when Leo's health deteriorated.
She said: "Of course you always put your children first, and yes, I have had to put some of my life aside because he needs that care and attention.
"I had to think about him despite the financial worries, I wouldn't forgive myself if anything happened and I had missed out on time with him.
"We have been having discussions about palliative and end of life care, that doesn't mean it is going to happen now, but they are hard things to talk about."
Kara added: "Having Leo has made me look at life differently, made me see what the real priorities are, given me a strength that I didn't know I had and made me a better mum and I wouldn't have it any other way."
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