Jacob stars in the McCain and Family Fund: 'Little Moments' TV Advert

Background

Jacob is three and lives in Lancashire with his mum, Tracy. He was born with Down's Syndrome and an atrioventricular septal defect (AVSD), which affects his heart.

Tracy says that “He is a proper character, considering he can’t speak he has a very funny personality.” 

Jacob’s Condition

Tracy explains that they found out about his condition a week before he was born. “When we saw the specialist, they did a scan and gave me a picture where they had scanned right into his face. She said his heart was worse than they thought, it was AVSD. They offered to terminate there and then, I was 36 weeks by then and they had just given me a picture of his face so I was heartbroken.”

Tracy went ahead with the birth, but there were further complications once Jacob was born. “He went into heart failure at two months old, and that’s when he was put on the medication. Then at six months old he was put into intensive care.

“They didn’t have space, so he had to be moved from Preston to Leeds, then we had four weeks for moving from Leeds, Manchester, and Alder Hey intensive care. They moved us around the hospitals until they did his open heart surgery and fixed his tiny heart.”

As a result of his condition, Jacob has low muscle tone and his speech is delayed. “Now he is getting older I am starting to see a difference between other children his age and it can be upsetting, but he is hitting his milestones, just a bit later. We didn’t think he would walk and he is a bit wobbly but he’s doing it, he’s running and climbing. Other people see us and think he is a lovely happy boy but he can get frustrated.”

Tracy also worries about Jacob’s ability to communicate. “At school they were supposed to be doing a signing course, but it was put back because of lockdown, so I hated to think he was signing and asking for something and no one knows what he’s saying.

“Preschool have done the Makaton course and are now signing with Jacob so I feel much better about things.”

 

Jacob’s Family

Tracy explains that having Jacob “Changed my whole life. It’s made me more patient; my friends might moan about their child having a tantrum and I just think they are lucky because that’s all they have to worry about. I think there are little things that people take for granted, I’m dying for him to call me Mummy, and I can’t wait.”

Being a parent to a child with additional needs is also challenging for Tracy. “It’s 24/7. I am a nervous wreck because he has no fear of danger. You have to keep your eye on him constantly. Stairs are a problem he has no fear of them and I struggle to carry him all the time. Occupational health has given us two rails for the stairs.

“He goes to pre-school three days a week so I can work, but it has been a nightmare. I work for the police and used to do shift work, but when I had Jacob, I always felt like I was having to ask people to have him so that I could work nights. So, I have managed to reduce my shifts and work them around Jacob’s appointments.”

Jacob is also very close to his dad and granddad. “His Dad is a farmer with cows and everything and he loves it. He loves tractors and trampolines. I think he is going to be very outdoorsy.

“My Dad plays every instrument possible and he’s a magician so he’s always entertaining. He just turned 70 last weekend but he’s a big kid, all the kids love him. But Jacob is his only Grandson and they are absolutely smitten. If Jacob’s a bit tired or grumpy Dad will walk past him and pretend to trip up and Jacob will think it is hilarious.

“He’s in our bubble and is a retired Entertainer he was the Ringmaster at Blackpool Tower. My Dad and Jacob are like two peas in a pod.”

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The impact of lockdown

Tracy says that lockdown “Was hard because at first it was just me and Jacob on our own in here and he had only just started walking in January so it’s not like we could get out and walk.

“Before lockdown we had something on every day and I was panicking most about his speech because we had been a waiting list for it and just got on as lockdown happened. He needs the social activity at school, so I think it has delayed him. So as soon as we could bubble with Mum and Dad it has been better.

“Weekends we are doing a drama class which has been allowed to carry on for toddlers, they sing and bounce. But he has a tendency to cuddle people so that has been hard with social distancing. But people have got to know him and they are nice, but we have been to other groups and they didn’t understand him.”

 

How we helped

“The first year we applied we got sensory items; bubble tube, lights he’s into everything but he has always liked lights. There are toys that we are still using now, so that definitely helped. I’ve got lights all around his room, he’s mesmerised by them. He’s my first child so I’ve never had any dealings with children with additional needs, it was all new to me. Not just buying toys but buying things that would help him.

“Most recently we got an iPad from you and already he knows how to sign in, click on apps, on YouTube he knows where to click to skip the ads. I think it’s from lockdown because we video calling family and watched Mr Tumble on it loads. He’s amazing.

“He started video calling family by himself while I was in the kitchen the other day, he’s a very good copier and he has been watching me speaking to family, so he copied me. When I’m making tea or getting ready and I can’t be with him 24/7 he is on the iPad.”

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How it made a difference

“He’s learnt Makaton through the iPad, and now asks for an ice cream every day, asked me for one at 7 o’clock in the morning the other day. When I picked him up from pre-school yesterday, I asked if he was ok and he signed ice cream and started laughing. My Mum buys ice cream in for him especially and he can hold it and eat it himself now. It’s the only food he will ask for.”

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