Tina Lowe has lost track of the number of tests her seven-year-old son Oliver has had.
She's lost track of the number of nights in intensive care, the number of doctors they've met, and the number of times he's been hooked up to oxygen to keep him alive.
Oliver can't speak and has chronic lung disease, an enlarged tongue, a restricted airway, autism and delayed development – but doctors have absolutely no idea why.
He can't eat solids, which means he can choke if he's sick, and can stop breathing at any time.
He is one of 6,000 children across the UK with an unidentified syndrome – a condition which has no name or is so rare that it has never been researched.
Speaking to the Mirror Online on SWAN's Undiagnosed Children’s Day 2019, Tina, who lives in Telford, said: "Oliver is one of the happiest children on the planet.
"He completely bounces back. He just works through it and fights. He is so brave and strong and inspires me every day.
"He doesn't know any different. He's so used to being ill he's just used to it now.
"For me, it's just the not knowing. We don't know his future.
"I just don't know how old he's going to grow to."
Just this week Tina had to rush Oliver to hospital as he was struggling to breathe in the night.
They have machines at home to check his breathing and oxygen is always on hand, with Oliver on 16 different types of medication every day.
Over the years they've seen doctors in all areas to try and work out why he has so many problems, but nobody can work it out.
They've also had gene testing which also brought no answers.
Tina said: People just assume that a child has got a diagnoses.
"The doctors haven't got a clue. There's no one we know that's like him.
"When people ask what's wrong and you have to give them a long list it gets to be a bit of a pain."
Oliver's problems means it has been a really tough seven years for Tina.
He has to be fed throughout the night and she barely sleeps as she's constantly listening out to check he's still breathing.
She said: "I haven't slept properly in seven years.
"It's exhausting and it's incredibly stressful.
"No matter where you go you've always got to be watching and listening."
Oliver was born by emergency c-section at 33 weeks as Tina developed a life-threatening complication.
He spent the next seven months moving between hospitals as he kept turning blue but nobody knew why.
He had countless tests and examinations, one of which showed he had four broken ribs and rickets.
Oliver now attends a special needs school and has started to communicate with his teachers using picture cards.
However he can't use them at home, so has to find other ways of communicating with his mum.
He can't eat solids so is peg fed. He also eats baby food, including his favourite – pureed chocolate pudding.
Tina found out about SWAN UK at an exhibition and joined up.
Now, she's a parent rep for Shropshire and helps other parents who are in the same situation.
She said: "I have found that being a member of SWAN UK is like being part of a huge and much needed support system and I don’t feel alone. It feels like Oliver fits somewhere instead of fitting everywhere and nowhere because of his many conditions.
"It has helped me feel less isolated and I’ve made lots of new friends. It's nice to meet up with other parents that know how I'm feeling.
"I hope to try to ensure that parents know that just because their child doesn’t have a diagnosis it doesn’t mean that they are alone."
SWAN UK national coordinator Lauren Roberts said: "Life for families affected by undiagnosed genetics conditions is tough, living in a limbo land with no answers they often feel like they have nowhere to turn.
"Although most families understand a diagnosis is not a magic wand, they live in hope that it might provide answers and relieve some of their fears – fears about what the future holds for their child, fears about whether future children might be affected and fear that it was something they did.
"Families affected by undiagnosed genetic conditions are often invisible – they shy away from traditional support for families of disabled children as they feel they don’t fit in. Undiagnosed Children’s Day is a chance for them to come together to raise awareness of the issues they face and celebrate all that their children achieve".
- Click here to read more about SWAN UK's work.
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