A nurse "panicked" when her newborn baby was "taken away" eight days after he was born.
Holding baby Kerem after a water birth at Liverpool Women's Hospital, Leanne, from Norris Green, noticed dark red spots all over his face. As an intensive care nurse, she was worried and asked the doctors to run some tests. At first it looked like an infection treatable with antibiotics, but then came the diagnosis – leukaemia, a form of blood cancer.
Kerem was in multi-organ failure by the time he arrived at Alder Hey Children's Hospital. Leanne barely had time to hold her eight-day-old baby before he was placed in an intensive care cubicle fitted with wires and breathing support.
All Leanne could do was stroke his feet for a week until she got to hold him again. Leanne, 36, said: "At that point, I didn't know whether we were going to take him home, so there were lots of mixed emotions.
"Thinking back to it upsets me because it brings all of the emotions that I had then back. But obviously I'm grateful because we did get to bring him home and he's absolutely fine now and you know, it was it was just a really bad thing that he had to go through.
"We're so grateful that he was so young because he's never going to remember any of that. Although it was hard for us, at least he's not going to remember it."
Those whirlwind days after Kerem's birth caught Leanne off guard. He'd been diagnosed with Down Syndrome after he was born. Leanne didn't know it at the time, but kids born with an extra chromosome are more likely to develop leukaemia.
She said: "I knew that a lot of children with Down Syndrome are born with heart defects and other issues. I never for one minute thought that it could be linked to leukaemia, so that was a big shock. And I'm an ICU nurse, so I've got a really good background with nursing, so obviously I was automatically thinking the worst and my man was working overtime. It was a crazy little whirlwind time really."
It was hard on Kerem's older brother Khalil. Leanne said: "He must have felt really lonely because he was missing his mum he didn't really know what was happening, so he must have been really confused. It was really hard for all of us, but we coped, we got through."
While in hospital, the family got support from Young Lives vs Cancer, a charity previously called CLIC Sargent. It gave advice and offered a spot in Ronald McDonald House, a "home away from home", which they turned down because the hospital is only 10 minutes down the road.
Young Lives vs Cancer also introduced them to Family Fund, the UK's largest grant-giving charity for families raising disabled or seriously ill children on the lowest incomes. With Kerem in hospital and Leanne on maternity leave, her husband had to take time off work at the Adelphi Hotel to care for Khalil.
He missed out on a lot of pay that could have gone towards the £9 per day hospital parking fees during Kerem's months-long stay. They also didn't have time to cook while juggling the rest, leaving them to eat more expensive hospital canteen food.
Family Fund covered those cost with the Aydemirs' first grant. Leanne said: "That was amazing at the time. I mean, we were so shocked that we could even apply for it. It was a really big help to us."
The charity also gives grants for essentials like bedding, clothes, home appliance, sensory equipment and family breaks. It's seen a 135% rise in grant applications since before the pandemic as families struggle with soaring costs, which have also squeezed the Aydemirs.
Leanne, who now has a 15-month-old child, was devastated when her most recent gas bill just doubled to £700. They can't lower because they need to keep the heating on and a humidifier running for Kerem's health, but Leanne earns too much to qualify for government support.
Family Fund helps cover some of the costs involved in raising Kerem, now six, who also has hypothyroidism and sensory processing disorder, delayed mobility due to Down Syndrome, and slower growth because of chemotherapy.
He first walked when he was two and half, and he still can't climb stairs alone, so he needs plenty of help and gadgets to support him. Family Fund has allowed the family to buy a nebuliser to help clear chest infections, and sensory cutlery and toys that won't trigger him with sudden noises or unpleasant textures.
They have a mirror with a bar in the middle so Kerem can build muscle tone by pulling himself up while looking at his reflection. The non-verbal boy also uses it to practice Makaton, a form of sign language.
Leanne described the support as "a godsend" that's helped him progress. Kerem has had further social and educational development since starting at a mainstream school with special education needs-trained teachers and onsite speech and language therapist or physiotherapist
Leanne sees caring as her purpose in life and feels raising Kerem has opened her eyes, teaching her to cherish milestones she might have missed. Leanne said: "With my older boy, I remember when he walked, I remember when he crawled, but I don't remember when he held his own bottle up, I don't remember when he did certain things.
But with Kerem, because it's taking them so much longer and it's been so much harder to achieve these goals, you notice every single thing. You appreciate every single milestone and inch stone and goal that they achieve. It's amazing because we try so hard for the smallest thing, even feeding himself.
"We tried for nearly a year, we tried all kinds of different cutlery and we tried different seats, different seating positions, different cutlery and bowls and cups, everything. Then when he finally was able to feed himself, it was like a big celebration in the house. Everyone was cheering him along and he was really clapping for himself. It's just overwhelming because they work so hard. It's such an achievement."
Family Fund, launched as part of a £3m government fund for families affected by disability caused by thalidomide medication, is celebrating its 50th anniversary this Sunday, April 2.
Cheryl Ward, the charity's chief executive, said: "For 50 years we've played a vital role in supporting families with disabled or seriously ill children, helping to make life easier with grants and services, whilst making their voices heard and sharing their experiences to influence lasting change on issues that matter to them.
"We are proud of the way we have supported families over this time, and continue, as we have for 50 years, to be led by what parents and carers themselves tell us what they need to make a difference to family life. Families continue to tell us our grants make a huge and practical difference to their everyday lives and for many they remain a lifeline.
"However, we are needed now more than ever, and continue to see the highest numbers of families coming to us for help in our history, with a 135% increase in grant applications since before the pandemic."
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