Steven’s Story

Hi

I’m Steven and I live in one of David Lewis’s community houses in Cheshire. I’ve lived here since 2018 and share my home with three others.

As a child I was diagnosed with cerebral palsy. This means that my arms and legs are stiff and it’s hard for me to walk. It’s also hard to talk, so I use a ‘talker’ to help everyone know what I’m thinking. The talker is great, it’s got my favourite foods and activities on it. Plus, it has emotions symbols so I can tell people when I feel ‘miffed off’!

In my early years I could walk with help from my mum and dad but over time it got harder for me. When I first joined I had physiotherapy treatment at David Lewis a few times a week. The team introduced me to a specialised walking frame. I wanted to use it a lot but I had to share it with other people, which got frustrating. A couple of years back my support worker and the fundraising team raised money to buy me my own ‘Meywalker’. Excellent!

I’m a sociable guy and I love going out in the local community. There’s a disco in Sandbach that I go to every week. I’m known for ripping up the dancefloor to the Venga Boys and Whitney Houston and wanting a cider to drink 😉. I go horse riding, trampolining and swimming, all great activities to keep me fit and healthy. Next month I’m off to the theatre to see Only Fools and Horses, what a show!

All this activity needs to be fuelled by food and I do enjoy a good roast. Controversially, I think sprouts might be my favourite food ever. I proudly own a sprout jumper and my family is always buying me sprout themed presents!

Life in the David Lewis community is pretty good. Thankfully, I don’t need to use my ‘miffed off’ symbol too often!

“Unapologetically Charlotte”

Nathan is the youngest brother of Charlotte, known to her family as ‘La’. Charlotte has been supported by David Lewis for nearly 13 years but Nathan states that it is not just Charlotte who has benefitted, it’s the whole family. “When Charlotte joined David Lewis, they promised to support Charlotte with every aspect of her life, and they delivered, exceeding our expectations. But it was seeing the impact the care has made on my parents and family; it’s like Charlotte has a whole team supporting her.  Seeing Charlotte lead such a fulfilled and independent life makes such a difference to us all. “

Although life can still be difficult, as Charlotte finds many situations challenging, Nathan states that she will always be “Unapologetically Charlotte” lighting up the room with her love of singing and dancing. “She is our La,” and she brings so much to our lives.”

Charlotte manages to get home twice a month, and during these visits, the family come over, usually my niece and nephew with their Auntie Charlotte and Ian, and Charlotte’s best friend Laura, who she’s been friends with since she was 13! These people play a massive part in Charlotte’s life, and she cherishes the time she gets to share with them.  My mum and Dad will order a takeaway- usually a Chinese- Charlotte’s favourite! They often watch a film, the sillier the better, often featuring Charlotte’s favourite- Jim Carey!

Nathan expressed how impressed he is with the exceptional facilities at David Lewis “Having the swimming pool, the café and Charlotte’s most favourite, Top Farm, all in one big, happy place is remarkable and gives people such opportunity to enrich and enjoy their lives. “

Seeing the impact that David Lewis has had on his family and other families, Nathan wanted to give something back. He’s chosen to raise money for The David Lewis Centre, by taking on his first running challenge, at the Manchester half marathon, with his two friends Andrew and Danny on Sunday, on October 13th and would love your support.

The Manchester half marathon takes place on 13th October. If you would like to support Nathan with this challenge, please donate to his JustGiving page at https://www.justgiving.com/page/nathan-hassall-1711648585547

David explains why the time was right to take the plunge …

My Daughter Emily has been at David Lewis for ten years, my wife Paula and I have always felt so grateful to everyone at David Lewis for turning all our lives around. When I saw the advert for the SkyDive- I knew it was time to take the plunge and give something back.

Emily has Lennox­- Gastaut a Severe form of Epilepsy. She experiences severe, dangerous seizures, which led to her not only putting herself in danger, but also meant that she ended up taking too much time off school and was withdrawn socially, So we were delighted when the opportunity came for her to have full time residential education and now an adult placement in a safe and supported environment at David Lewis. 

David says he and Paula knew others who had children with complex needs, who were really struggling to come to terms with their children’s abilities. Epilepsy is so challenging, but it doesn’t define her.  David Lewis turned her ‘condition’ into part of her.

However, the seizures were still happening, and after tests, doctors at David Lewis recommended an operation to reduce one of the severe A Tonic types. The operation was successful, and the seizures did reduce in severity, but so did some of her personality, It was as though part of her joy was gone and a cloudy fogginess left her feeling very moody and altered her behaviour.

Although Emily still has other multi seizures, it was the doctors at David Lewis who successfully identified the right medications. They cleared the fog and brought Emily’s brightness back.

As Emily developed, she is now 28, she began to need more stimulus and interaction, so the staff responded by suggesting a move to a different house.       This is one of the main benefits for Emily, being at David Lewis; they were able to adapt the support to her needs.  Moving to her new home at David Lewis gave her a more active, engaging lifestyle; in addition, some of the staff who worked with Emily at Redwood, came with her! This helped with the continuity of care and support, to which Emily responds so well to.

David Lewis is more than just a place for Emily to Live, study, or sleep; it’s her home and a very happy one. She loves Bingo and singing ABBA songs. Every week, Emily works in the café, shop, and reception for an hour at a time. This has given her confidence, and she often delights in telling us about the new friends she makes. She swims, goes out, gets her hair done, and enjoys lunch at a local café. She’s busier than anyone I know!

David explained that once Emily was settled at David Lewis, they could relax. “We know she is secure and contented at David Lewis…  And if Emily does get to the stage where she can lead an independent life, and can be part of a bigger community then that’s great, but we know her future at David Lewis will always be a happy one. “ David successfully completed the skydive for David Lewis last week. He raised £1730… But, you can still support David Lewis by donating to David’s skydive page

Tracy’s story

Hi, I’m Tracy. I live in Hutton House onsite at David Lewis Centre.  I’ve lived in a few different houses since I’ve been at David Lewis but this one is definitely my favourite!

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Matthew and Simon’s story

Matthew began to experience seizures at the age of six after falling on the back of his head on a stone floor two years previously. By the age of 16 his seizures had become frequent and were having significant impacts on his and his family’s life. Matthew had a placement at a boarding school and as wonderful as the team were, they struggled to accommodate his medical needs. Ultimately, he returned to his family who spent a year trying to find another placement.

Matthew’s father, Simon, reported how hard it was to observe his son having a ‘major’.

“One day we went to Madame Tussauds. It was a typical family day out until he started to have a terrible seizure. We both got down on the floor and I wrapped my arms around him. We were there for a long time. It was around that time that we realised that we couldn’t continue to care for Matthew at home and that we all needed more support.”

“Things changed radically for the better when we were introduced to David Lewis School through a family friend. Matthew was quite poorly at this stage and it felt quite momentous that he could attend a school where he would also have ready access to medical staff. The team were amazing and spent a lot of time understanding him and his condition. Reasonably quickly, his seizures became much better controlled.”

Matthew’s life at David Lewis has been a full one. Over the years he has taught IT to underprivileged young people at a local college, practised his piano and become a skilled carpenter. Now, in his early 60’s he lives with others in a David Lewis community house and has far fewer major seizures than in the early days. Simon notes,

“David Lewis has always been curious on Matthew’s behalf and ready to try new approaches to his care. The game changer for Matthew has been the calmness, the safe environment and the predictability of the care he has received since going to the Centre all those years ago.”

The Potten Family’s story

Joanna came to David Lewis in her late 30’s. Her previous long term placement had broken down as the staff couldn’t support her medical needs around her epilepsy. It was a difficult period for her family as they tried to find somewhere suitable for Joanna to live, and for Joanna as she tried to make sense of the changes to her rituals and homelife. Her mother, Diana, shares with us her experiences:

“It was a challenging time. Jo Jo was finding things really difficult and this translated to some extreme behaviours. She needed full time care and whilst she stayed with us at home for a while, it really wasn’t a long term solution.

“I went to the hairdressers and picked up a copy of Good Housekeeping magazine. I spotted a small article that talked about epilepsy and it mentioned David Lewis, and how it was a beacon of care for people like Joanna. I rushed home and called them. Whilst they were helpful, they also tempered my expectations by saying that they had a long waiting list. After a long discussion they suggested Jo Jo come and stay with them for a six week assessment period, they would observe her and report back on her needs. When the six weeks ended, we went up to Cheshire to meet with the staff writing the report. I can’t tell you how relieved I was when they said, ‘we think she should stay with us’.

As Joanna settled and received expert medical care, her behaviour changed. Over the years Jo Jo lived her life to the fullest. She began to call David Lewis ‘home’ and shared her love of classical music and dancing with her house mates and staff. 

Diana, explained how important it was to Jo Jo, that she was having similar life experiences to her two brothers,

“She had her own life at David Lewis. She did things her brothers did and that was great for her self-worth. If she’d stayed at home with us she would have been really isolated. Instead, she had real friendships, a long-term relationship and she worked in the on-site shop two days a week. She had independence for the first time and that was so important to her.

Jo Jo took her job at the shop seriously. She knew the price for every piece of stock. Simon, her brother jokes, “She would tell me every week about the rising price of Crunchies! She would often refuse to go out or talk on the phone late on the night before her work days, telling us, ‘I need to go to bed early tonight, I’ve got work tomorrow’.”

Simon told us how living onsite here helped her to rediscover her gregarious character, “she had friends that she couldn’t wait to tell you about” and how the staff caring for her showed palpable affection.

“They really went the extra mile. On my wedding day they drove her all the way down to Oxfordshire. One of my special memories of that day was Jo Jo grinning in the back of the staff vehicle surrounded by bouquets of flowers. She was like the Queen of Sheba!”

Joanna loved going to the onsite café at David Lewis, visiting religiously three times a week. The staff knew to reserve her the table she loved, taking care to get the ‘reserved’ sign up early! Jo Jo loved the café, meeting her brother Jonathan there on his regular visits.

“I loved watching her in action in there. She relished the sense of occasion and I loved the insight it gave me into her daily life. She knew everyone and would spend her time directing people and making sure they were doing everything just right. Plus, she always paid for lunch!”

Sadly Joanna passed away in 2022. At her well attended funeral her brother Simon spoke of how he knew Joanna was happy at David Lewis because her behaviour in her David Lewis house mirrored her behaviour at home with the family, “It was the same Jo Jo, she got everything she needed there too.”

Stella and Elise’s story

Stella’s daughter Elise has been living at David Lewis for just over seven years. Due to her diagnosis of Dravet Syndrome it had become difficult to accommodate Elise, nicknamed Lou, at the local special needs school where she had a placement. Lou wasn’t engaged or motivated and sometimes spent the whole day at school asleep or having lots of low level seizure activity.

Over time Lou became more isolated and withdrawn. Stella became increasingly aware of the need to move her daughter and get her the support she needed and reached out to the Dravet community.

“David Lewis was a name that just kept coming up”, said Stella. “We visited and were immediately blown away by the facilities on offer. Whilst the thought of Lou living away from home was so daunting, we knew it was the right thing to do for her, and that David Lewis would give her the care she needed”.

Lou moved in to a single occupancy flat adjacent on the main site a year or so later. Stella commented, “I was heartbroken on her first night away. It was such a big step. But within such a short time she was so much calmer. Being in that flat was the making of her, she really thrived in that environment.”

At the same time Lou received specialist support from the medical and behavioural teams at David Lewis. The medical team trialled new medications to get her seizures under control. The behavioural team worked to unpick her challenging behaviour and put strategies in place that were followed by her care team.

“It’s been like a virtuous circle”, says Stella, “When her seizures were better controlled her behaviour improved. Lou is great fun and David Lewis has allowed that part of her to shine. She likes nothing more than to be chilling out in her flat with her care worker listening to her favourite Status Quo songs! She prefers her own company but David Lewis staff have helped her to come out of her shell. And nowadays she’s trying new things like swimming and walking, these are activities that would have been unthinkable some years ago”.

“Ultimately the environment at David Lewis has been the making of Lou. The set up and privacy of the site gives independence to people with quite complex needs. The staff have worked tirelessly for Lou to unlock her potential. I’m convinced she’s in the best possible place.”