Sam and Beth star in the McCain and Family Fund: 'Little Moments' TV Advert

Background

Beth and Sam are 12 and 13 years old, and live in Plymouth with their brother, Ollie, who is six, their mum Maria, and dad, Christopher.

Sam has diplegic cerebral palsy, which affects his motor skills and movement. Beth had a major stroke aged two and a half and was left with right side hemiplesis, which gives her seizures and affects her right sided movement.

Maria is their main carer, and says “I’d describe my family as beautifully broken.”

 

Sam’s condition

Sam was born premature, which Maria explains has led to a diagnosis of “diplegic cerebral palsy that means that he is mostly affected from the waist down. He’s quite good with his hands but he doesn’t have fine motor skills so he can’t write, finds it difficult to raise a spoon to his mouth and move in a co-ordinated way. He can move his arms around but when he has to bring it together and move in a co-ordinated way he struggles.”

Sam also needs certain equipment to be adapted for his needs. “He can’t walk, he has problems toileting so we have a fully adapted bathroom and a fully adapted car for him. He has a wheelchair a standing frame and lots of equipment.”

However, Maria adds that Sam is very clever and enjoys school. “He goes to a main stream school and is supported by a full Educational Health Care Plan (EHCP) Sam and Beth go to the same school, but Beth doesn’t have as much support. Sam’s dyslexic and Beth’s dyscalculic, but there’s more known about dyslexia so Sam has more support in place.”

 

Beth’s condition

Maria says that Beth’s condition is as a result of a stroke she had when she was younger. “Beth had a major stroke when she was two and a half because of a clot on the brain, she was left with right side hemiplesis which means she doesn’t really use her right hand. So, she went from being right-handed to left-handed.

"She turns her leg in awkwardly so gets a lot of pain.”

“She has episodes that don’t come up as seizures but look like seizures so they are being investigated. At the time of her stroke, she did have seizures but they said her brain would change over time you just have to manage it, which is what you do.”

 

How it affects the family

The family have to live their lives to adapt to both children’s needs. Maria adds that “We don’t really get a lot of choice in things. I drive a van that Motability provided us. We have a bungalow not a house, we have a bathroom that suits Sam’s needs and a table that his wheelchair can get under. It’s all nice and lovely, but it’s that we get very little choice in any of these things.”

Sam and Beth have a younger brother, Ollie. Maria says “Ollie is a completely different character, when they say someone is from a different mould, they were talking about him. He’s loud, Sam and Beth are quite quietly spoken. Sam will talk to you for hours on end, he’s quite sociable, but he wouldn’t be in your face. Ollie is and wants your attention all of the time.

“I do think that there are elements of attention seeking behaviour that comes from how much attention I have to give to the others. The older he gets the more he’s noticing, but he doesn’t seem to help out at the moment. Ollie goes to a different school to where Sam and Beth went so, he’s not known as their brother but as Ollie in his own right, which I thought was very important for him.

“Both Beth and Ollie get frustrated that they do a lot more tidying up or something because Sam physically can’t do it. They all get frustrated but we talk it through and they understand.”

Maria adds that Beth takes on a carer role for Sam, too. “Beth takes the carer role and helps; she doesn’t do it consciously but for example we have taken to wearing these scarves and, in a morning, when they are waiting for the bus she will say ‘Oh Sam wait a minute’ and she will pull his scarf up for him. She knows he needs it, so she will just do it.”

She also acknowledges how having two disabled children has affected her life. “I think it’s changed me entirely, I’m not the same person I was 13 years ago, I’m far more outspoken confident, aware than I used to be. I hope it’s changed me in positive ways, but I think there are some negatives. I can be very negative thinking, I was more optimistic before but when you have one thing after another, after another it can kind of wear you down.

“Everything is a fight. I am quite good, we get a lot of no’s – especially with Sam’s wheelchair, I think it took me around six years to wear them down and get the chair he needed. Waiting for the right timing, getting the right consultants and the right paper work. It does shape you, but I think if it shapes you in the right way it can be a positive. And if you approach things in the right way then it can be much more helpful.  

“I’m in a position where, I could work but work don’t tend to like it when you have to keep saying you need an afternoon off for appointments or you need to pick up the kids at short notice, life doesn’t work that way does it. I ended up having to give up work so it does mean that we are on a lower income.”

Maria adds that “Life is harder with a child in a wheelchair especially in a supermarket when you have got one in a wheelchair and one having an episode on the floor and you just have to stand there and wait for a minute, you get a lot of stares.”

 

The impact of lockdown

Maria says that the pandemic has had mixed effects on the family. “It was quite nice in that it pushed pause, when it happened, we thought we could breathe. But then lockdown has gone on and gone on so now instead of waiting six months for an operation Sam’s going to be waiting about a year to 18 months. And then by the end of that we will be reassessing if he is too far gone for the operation at all.

“Beth’s foot needs casting, should have been done months ago and it’s really turned in and the pain is quite bad now. So, it was quite nice to have a breather but now they have just rung me to say they are not doing any face-to-face appointments if they can help it and that they would call me. It’s been quite tricky in that respect.”

The family have also been waiting 18 months to get counselling for the children following the pandemic.

 

How we helped

Maria and her family have had four grants. “The first one was a tablet, then a computer and a trip to Legoland. Sam can’t use a pencil at all, can’t write, but he’s incredibly intelligent. So, the use of IT is massively important to him, so he relies heavily on this PC that you guys gave, it’s been heaven sent, I think.

“And again, when he was a lot younger the tablet because he wasn’t ready for a PC, helped him with his phonics and that kind of thing.”

The most recent grant was for a console, and Maria adds “Needless to say, he loves it!”

 

How it made a difference

“The LEGOLAND trip was really helpful to all of us. My daughter had a stroke, but she falls into a really funny category because she is so able, she’s also kind of a carer for Sam. So, that break was a really good time for her to have some time with us as a family.

“We certainly wouldn’t have been able to afford somewhere like LEGOLAND because when you have one child in a wheelchair and one child who sometimes has seizures you have to think about where you are going. You can’t just get on a bus and go somewhere, lots of places are inaccessible or don’t have the facilities.

“I am very grateful for everything. In a world where every day can be hard, Family Fund provide the small things which make a massive difference.”