THESE incredible children have only just started their lives – but their tiny bodies already know what it feels like to be an OAP.
The five youngsters have a combined age of 30 but each has had to deal with conditions including stroke, high cholesterol and even Alzheimer’s.
With the support of doctors and their proud parents, they have bravely battled through and proved to be little fighters every step of the way.
CLARE O’REILLY meets them and their mums to share their stories.
It was 50:50 he'd survive till he was twoMum of Tyler
BORN prematurely at 29 weeks, Tyler has pulmonary vein stenosis, a serious condition where the heart cannot receive oxygen-rich blood.
Shortly after his diagnosis, Tyler had a stroke at just ten months old. He spent the first 15 months of his life in and out of surgery – including operations to have balloons fitted in his vein to help blood flow.
His mum, Katie Richardson, 33, from Brighton, says:
At six months old, Tyler went blue and almost stopped breathing.
He was diagnosed with pulmonary vein stenosis and doctors told us he was incredibly fortunate to be alive without having had treatment so far.
His veins weren’t open enough so the decision was made to put balloons in. He needed bigger ones fitted at nine months old but when they started failing, we were told they needed to be put further into the vein – but doing so would make his condition life-limiting if they failed.
If we’d said no, Tyler would have died that night.
The ones he has now have been in for over five years but could fail at any time, which would mean he would lose his life.
He was one of the youngest patients in the world to have the procedure but back on the ward he wouldn’t settle.
I managed to get him to sleep on his right-hand side but when he woke up he couldn’t move his right side at all.
A small clot travelled up to his brain and caused a stroke. All this before he was even one year old.
He started a rigorous course of physio and occupational therapy to regain the use of his right side but he won’t ever get the use fully back.
Tyler finally came home when he was 15 months and ten days old. We were told it was 50:50 that he’d survive until he was two – he’s seven in April.
We count every day as a blessing and couldn’t be more proud of him.
I heard an awful sound, like she was dying and chokingMum of Phoebe
CLAIRE BRYANT’S daughter, Phoebe, from Bristol, has suffered reflex anoxic seizures since she was little more than a month old.
They occur because the electrophysiology of her heart stops it beating. Claire, 32, a teaching assistant, says:
Phoebe was six weeks old when I heard the most awful sound on her baby monitor at home. It sounded like she was dying and choking at the same time.
We called an ambulance and she was resuscitated. They kept her in hospital overnight but couldn’t find anything, so we were sent home. This kept happening for the next seven months but doctors couldn’t find a cause.
She was eventually diagnosed at 12 months and needed an emergency pacemaker, which was fitted a month later.
She still suffers the seizures but they’re just a vacancy for her now as the pacemaker kicks in.
While she’s a normal little girl, she can’t use iPads or iPhones because they could reset her pacemaker.
Phoebe is really proud of the little box inside her chest. The first year of her life was terrifying but her future looks so much brighter.
She's my world but I had to mourn the baby I gave birth toMum of Holly
AFTER a series of infections and hospital stays, Holly was diagnosed with Niemann-Pick Type C, a rare genetic condition under the Alzheimer’s umbrella.
Mum Elaine, 38, from Dudley, West Mids, says:
Despite being 5lb when she was born, Holly developed normally for the first year of her life.
When she was 18 months old she got a throat and ear infection. Doctors also found she had a swollen spleen and kept her in hospital for nine days while they did tests.
She was formally diagnosed with Niemann Pick Type C at 20 months. When I was told it was a metabolic disease that’d eventually attack her brain and the symptoms were like Alzheimer’s, my world imploded.
I had envisioned us doing lots of things together as she grew up but there is no cure and she will never get better.
She stopped making eye contact, cannot speak and lost what little mobility she had. She’s also got very severe Crohn’s disease, which has limited her mobility, too.
She’s still my world. She’s funny, smart, girly and loves her cuddles – but I’ve had to mourn the Holly I gave birth to.
No-one told me I could pass it on to my kidsMum of Kip, 8
LIKE his mum Jo Tidmarsh, 40, and grandad Kip O’Brien, Alfie has familial hypercholesterolaemia (FH).
It is a hereditary condition which causes high cholesterol and can lead to a heart attack at an early age. Kip, 69, had his first aged 30. Mum-of-three Jo, a teaching assistant from Leighton Buzzard, Beds, says:
My dad had a triple bypass after his first heart attack and, because he was so young, my brothers and I were tested for FH. I was the only one that had it, too.
While I don’t remember life without the diagnosis, I felt very different growing up. I couldn’t have chocolate, fat, everything had to be home-made, no processed food, no birthday cakes and I was on medication.
But no one told me I could pass it on to my kids. Only after I had my eldest Charlie, now 16, did doctors tell me.
Dad had another bypass when he was 51 and was referred to Harefield Hospital in London, which has a research department looking into FH.
The support was amazing. When I had Frank, now 11, and Alfie, they told me all the boys should be tested. They isolated Dad’s gene that caused his FH so knew exactly what to look for.
When I found out Alfie was the only one to have it, I was heartbroken for him. He was three so didn’t know any different but I’m determined it won’t isolate him as much as it did me.
He knows he has it and he knows he can’t have chocolate and cake and treats like his peers do but he’s amazing. He’s not on medication at the moment, just diet and exercise, but he’ll go on to statins next year.
His future looks brighter than mine did. Doctors are confident they can disable the mutated gene in Alfie before he starts his own family.
She couldn't see the bus, let alone the number on itMum of Tilly, 8
AT five years old, Caitlyn Banks’s daughter, Tilly, was diagnosed with cataracts.
Caitlyn is a freelance marketing manager from South West London. The 34-year-old says:
We were on holiday in Devon and because Tilly was in reception and learning her letters and words, I’d ask her to read signs.
She was having to squint at the ones that were far away. I made an appointment for her at the optician’s but it seemed like her sight was deteriorating even more.
On the way to the eye test, I asked if she could read the number on a bus ahead of us – she couldn’t see the bus let alone the number.
The optician said she had cataracts. Tilly’s dad had them when he was young but I had no idea they could have been hereditary.
We were referred to Great Ormond Street. Prosthetic lenses were placed behind her eyes and they removed the cloudy lenses.
The difference was incredible but she’s still losing vision, so doctors are investigating why.
Tilly has to sit at the front of the class and other than wearing glasses, she is no different to any other little girl.