Kerem is five, and lives in Liverpool with his mum, dad, and brother Khalil.

He was born with Down’s syndrome and developed leukaemia as a baby, as well as hypothyroidism and glue ear. Mum Leanne explains, “It is hard because you really have to adapt your life to your child. It makes you realise a lot more about who you are like as a person, and what life is about.”

Kerem’s condition

Leanne says “He was born with Down’s syndrome and then developed transient leukaemia which he needed treatment for, and then developed into acute myeloid leukemia (AML). He was under oncology for the first three years and had to have chemotherapy. He’s been in remission now for two and a half years.”

Kerem’s conditions have different, but severe impacts on his everyday life, from his cognitive ability through to mobility. “With his Down’s syndrome he’s got a learning difficulty and a cognitive impairment. He’s five years old now, but he’s only functioning at the level of an 8-20 month baby. He’s around three years behind where he should be, he should be going into Year One this year but he’s still in nursery instead.”

Because of the chemotherapy, he wasn’t producing enough growth hormones which has affected his growth development.

"Although he’s five, he’s actually the size of an 18-24 month old. He’s in a mainstream nursery, and they don’t really have things like this for children with additional needs, especially for children as small as he is.”

“As his growth is affected, it’s taking him longer to mobilise. We spent a lot of time in hospital for his leukaemia, so he wasn’t practicing mobility then. He sometimes has to take medication for the leukaemia too, which can cause him to have accidents which unsettle him, and he also isn’t potty trained at the moment.”

“He’s also got hypothyroidism which he takes levothyroxine for which adds to his delayed development. He’s got a hearing band as he has glue ear. He’s not very happy about his hearing bands, he’s smashed it twice. It’s easier during the summer but it’s during the winter that he becomes more congested and the glue ear is worse. It’s quite expensive to replace and is a choking hazard, so he has to be watched when he’s got it on.”

Leanne adds “He’s a happy little boy, he’s just been delayed.”

How it affects the family

Kerem’s mum and dad both work, have an older son, and had to adjust their lives to fit around Kerem. “You have to adapt to a child anyway, but with Kerem because of his extra needs you do need to be a lot more aware of unplanned things.”

“We are aware of his needs and need to accommodate those. I’m a nurse and had to change my shifts to work nights so that I could be there during the day to look after him. He still has a lot of hospital appointments and appointments with the school, so it’s just easier for me to be there.”

His older brother, Khalil, is two years older and visited Kerem in hospital when he was having chemotherapy. “Khalil is a lot more sensitive, and I don’t know whether that’s because he saw Kerem when he was sick, but he’s just a lot more loving and aware of Kerem’s needs. He does worry a lot about Kerem and he’s always looking out for him, and he’s only seven himself.”

“It’s made us aware of the things that you miss with an atypical child. It might sound bad but I can’t remember when my older boy held his own bottle up or hit milestones, because with Kerem it’s such a big thing for him to hit a little milestone you notice every single thing they do. You celebrate every little thing they do.”

The impact of Lockdown

Leanne is a keyworker, so explains that the coronavirus pandemic was a challenging time. “It was hard during lockdown as a nurse. My husband was furloughed from work so he was at home, but because of my job I needed to be in. My option was to go in a hotel and stay away from Kerem, which I couldn’t do, so I ended up coming home and being very worried about what I carried in. I’d get washed straight away to limit what I brought back to him.”

Kerem and his brother also had to be home-schooled. “He did come on a lot more with his speech as we were having more sensory sessions in his room, but then it was harder to get him back to nursery when the time came because he’d gotten into a routine and then that routine was disturbed. He was very clingy the whole time he was at home too, which made it harder for him to leave me and go back to school.”

“When they did go back to school Kerem was a bit upset at first but was happier when he saw his 1:1 helper, then I turned around and saw Khalil was upset because he didn’t want to leave Kerem.”

How we helped

Leanne says that the Family Fund grants have allowed the family to provide Kerem with a calming sensory space. “We’ve had a few sensory products and things that we use for Kerem and they’ve been really helpful. It’s meant that we’ve been able to turn his room into a sensory room because he has sensory processing disorder.”

“We’ve had sensory garden furniture as well, meaning we could create an outdoor sensory den. There are some lights in there and he loves that. When he’s having a stressful day, Kerem likes to have his quiet time. We can take him into the garden or into his room and put him into his sensory areas.”

“We’ve got beanbags, lights, chimes that hang down with soft toys on them, there are balls with different textures on for him, some have spikes or grips or lights inside them. He likes playing with all of them. He’s got a sensory swing too that we can put up and he absolutely loves it. We also got a tablet too, which we can download all of his speech and language apps onto.”

“We’ve booked a family break for Center Parcs next may, which will be good. It means that we have something to look forward to as a family.”

How it made a difference

Leanne explains that the grant items have made a big difference to Kerem’s life. “He’s come on a lot thanks to the grants. The items have helped him learn to stand, with his cognitive ability, as well as his find motor skills. We’ve had a lot of speech items as well which have helped him with his Makaton.”

“He still can’t climb the stairs independently, he couldn’t even get his leg up onto the stair until he was about three and a half because he’s only small. But the equipment we’ve got has enabled him to practice his climbing, as well as smaller seats that he can fit in properly, and a mirror with a pole in which he used to teach himself to pull up. As he grows, we can also adjust that for his size.” 

It’s helped him develop more rapidly with the sensory equipment we’ve got.

"It’s helped his moods too, because sometimes he’d get into moods where he’d throw things about and it was really hard to calm him down. But since we’ve had the sensory rooms it’s a lot easier and a lot faster to settle him.”

“During the night he sometimes has accidents due to the medication he’s taking, so we have to wake him up and bath him. He used to really struggle with being disturbed, but as the sensory items are in his room it’s a much more calming environment for him now. He’s more easily settled.”

Leanne adds that the grants have helped Kerem with his nursery experience too. “We’ve been able to advise the nursery with the sensory equipment we’ve got, and even take our own items into the nursery for Kerem to use so he can access the equipment there. It brings some consistency for him.”

“He didn’t really interact with other children before we got the sensory items, and with the sound of other children playing at nursery he didn’t really like going, but since he’s had his sensory items he’s been able to work on his focus and fine motor skills. It’s enabled him to go and play in nursery which seems like something small, but is so big for him.”

Find out how to apply for a Family Fund grant

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