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‘I didn’t know this could happen to a child’

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When Lily had a stroke aged only eight, such a diagnosis never crossed her family’s minds. Here, her mum Natalie shares their story of rebuilding their lives and why they are committed to raising awareness of childhood stroke

 

Almost a year ago, in April last year, eight-year-old Lily was rushed to Queens Hospital in Romford after collapsing at home. 

“It was a Monday afternoon during the first national lockdown, and we were preparing to do some schoolwork,” recalls her mum, Natalie. 

“Lily had been playing with her older brother all morning, laughing, and having fun. 

“We could never have imagined what was about to happen. There were no warning signs.

“She came to me and said her hand felt weird. I told her it was probably pins and needles and if she just wiggled her fingers around it would go away. 

“Lily was sure it wasn’t pins and needles and kept saying she ‘felt weird and didn’t like it’. I laid her down in my bed to see if that would help her feel any better.

“We laid for a couple of minutes before Lily said she needed the toilet. As she went to get up, she collapsed down the right side of her body. 

“I had no idea what was happening. I picked her up and sat her on the toilet, and she couldn’t even hold herself up.”

Natalie immediately called 999 and was advised that an ambulance was 40 minutes away. After just five minutes, Lily appeared very confused and could no longer talk.

“I called 999 again and told them we couldn’t wait, we needed them to come quickly,” she says. 

“This had all happened within half an hour. Lily had gone from giggling with her brother to being completely paralysed down the right side of her body. 

“When she arrived at the hospital, Lily had lots of different tests and scans.

“We were then blue lighted to Great Ormond Street Hospital (GOSH) in London. There they confirmed that Lily had suffered a stroke. 

“All the typical stroke symptoms that they tell you to look out for had happened to Lily – Face, Arm, Speech – but it just never occurred to me that this could happen to a child. 

“I had always assumed that it just happened to older people. I was wrong.”

Lily spent four weeks at GOSH and the hugely difficult time for the family was made worse by the COVID-19 lockdown rules in place at the time. 

The restrictions meant that only one parent was able to be with Lily in hospital, and they couldn’t switch.

“As Bill, Lily’s dad, had gone in the ambulance with her, he was the only parent allowed to stay,” says Natalie. 

“I couldn’t see her at all. We are a very close family, and this meant we were totally split. Even on Lily’s birthday. 

“The nurses made it as special as they could for her, but I just desperately wanted to be there. It was the toughest time of our lives.”

At the end of May, Lily moved from GOSH to The Children’s Trust in Tadworth, Surrey. 

“I think we were all excited. When her team at the hospital first mentioned it, it sounded amazing, exactly what Lily needed. It also meant that as soon as she got there, I would be allowed to see her as two parents could visit on site,” continues Natalie.

“I was so thankful to be a part of her rehabilitation. Bill had been amazing, but I wanted my turn, and he needed a break – although he wouldn’t admit it. 

“He hadn’t been home for a month, seen our son Alfie, or even sat on a sofa. All the things you normally take for granted.

“Unfortunately, due to ongoing COVID-19 restrictions, Alfie wasn’t able to visit, so it was still really challenging for us and the family still felt somewhat separated. 

“I think Lily felt a bit apprehensive about it all. Meeting lots of new people, including a new rehabilitation team, and moving into a new room was all a bit scary for her. But all the staff were amazing, and they really helped settle Lily and make her feel welcome.”

Lily’s busy rehabilitation schedule meant she had sessions from 9.30am until 4pm every day. These included occupational therapy, physiotherapy, speech and language therapy, school lessons and play therapy.

“Lily was an absolute delight to work with,” says Mairi, specialist occupational therapist at The Children’s Trust.

“One of her goals was to improve the strength in her right arm for activities such as dressing herself and being able to do arts and crafts. 

“It was a joy to work towards this with Lily as she always encouraged us to find lots of ways to make therapy more fun. 

“This included learning lots of TikTok dances that included the use of Lily’s right arm, making bracelets and making slime whilst using both hands. 

“By the end of her placement Lily’s right arm was much stronger and we could barely keep up with her in her TikTok dances!”

On July 2, Lily was able to ring the ‘going home bell’ to celebrate all that she had achieved during her time at The Children’s Trust. 

“It was such a special day for us, and we are so proud of her,” remembers Natalie. 

“Since being home, Lily still has to attend appointments at GOSH, to have further scans and angiograms, and these sometimes involve overnight stays, but she is doing so well. She’s also continuing the TikTok dances, she just loves it!

“Family life is starting to feel normal again. In September 2020, Lily went back to school, doing just two hours a day.

“Just before Christmas, she had progressed to staying until 12.30pm every day and was managing this really well.

“I still feel anxious about everything that has happened and I think it will take time for us as a family to fully ‘recover’ from what happened to Lily. 

“Going forward I would like to help raise awareness of childhood strokes, as it’s something I had not heard of, and bring families together who had been through similar experiences.”

Insight

‘Don’t be alone, don’t be too proud to reach out for help’

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After Vasili Kalisperas was born a healthy baby, his jaundice was left undetected by midwives and led to him being left with cerebral palsy and needing round-the-clock care. Here, his mum Elena discusses the huge mental health challenges of being a parent in such a position and how she learned to admit it’s OK not to be OK 

 

I’ve always been a very optimistic and positive person, which I do think helps during such traumatic times, but that’s definitely not to say it hasn’t been a struggle. As equipped as you might be in terms of your outlook on life to deal with challenges, when something so traumatic happens to you, it is of course going to be a struggle to come to terms with that. 

No-one tells you how to cope, you can never prepare yourself for something like this. There is no right or wrong way to do things and you can only get through it as best you can. 

My husband and I dealt with things so differently in the early days. He found comfort in talking about what had happened to Vasili, by sharing a lot of information on social media, whereas for me I was more introvert, I didn’t want to do that.

I was diagnosed with PTSD, which stemmed from the fact our situation was so completely preventable. I became fixated with Vasili still being in the womb, when things were still fine, and I so desperately wanted to find a way to turn back time. I had a water birth with Vasili, and every time I had a bath I’d be in there for hours crying, reliving the whole experience of giving birth to him, feeling the exact pains I felt. 

My husband made sure I was cared for and was OK, but finding help was hard. I did try and get medical help but the waiting list was huge. I waited for over a year to see a therapist but I didn’t find it helpful – she wasn’t trained in my needs and was a general counsellor, so I didn’t get anywhere. I was then referred somewhere else, but that was in the same place I had my check ups when I was expecting Vasili, and that in itself was too traumatic. 

After being bounced around for a couple of years, eventually, I went privately and found an amazing therapist. It does take a huge amount of time and energy to relive the experience, but I found that opening up and talking about how I felt was so important. I also discovered EMDR therapy through these sessions, which was fantastic and really helped me so much. I realised how far I had come through taking that decision to open up and look for support. 

If you have a support network around you, then that can be vital in times of trauma. Even if friends don’t know quite what to say, the fact that they’ll listen can be so valuable. My mum and sister were always there, anytime I needed anything. There were times when no-one could say the right thing, no-one could fix what had happened, but just being able to talk and cry and share what I was going through helped me so much. You need to allow yourself time to grieve, as it really is a grieving process. 

In society, while things have thankfully changed massively in recent years, there is still a feeling for many people that showing emotions is a sign of weakness. There is still a stigma in admitting you’re struggling with your mental health, but I see that it’s like your physical health – you’re never going to breeze through life without any problems at all, it’s going to happen to us all at some point. No-one should ever be afraid to admit they’re struggling and they need support. 

Lockdown has been difficult for us all, and seeing the impact on the children and my oldest daughter in particular, has been awful. She is in high school and not being able to leave the house has had a big impact on her mental health. But as a family, we share our feelings and talk about it, and I teach my children the importance of positivity and an optimistic outlook to help them cope with challenges.  

In learning to deal with what you face and move on with your life, you need to accept it and forgive yourself by recognising it isn’t your fault. It has been a long journey for me – Vasili will be nine in May – but we’ve made so much progress. 

While Vasili and our other children are of course our priority, I’ve learnt the importance of making time for self love and care. Without making time for that, you’ll run yourself into the ground. For the last two-and-a-half years, the children have been at school every day, which has meant I’ve had time to take control of my mental and physical health. I started doing daily exercise, which began by making sure I got out to walk every day, and I now regularly go to the gym. It’s a big release for me. 

I’ve also reached a place where I’m able to look to the future and I’ve started my own business as a hairdresser, working from home in a salon we’ve created in an outbuilding. Being a hairdresser gives me a chance to help other people to open up and discuss anything that’s on their mind, which for many people may be the only chance they have to do that. And also, I’m training to be a personal trainer – I’m already a mental health first aider, and I’ve seen for myself the impact that exercise can have during the most trying times, so I think the combination of mental and physical wellbeing support is so important and I’d love to help people with those. 

For me, in being able to find acceptance of our situation, I’ve been able to move on and find time for myself and what I want to do with my life. I’ve definitely found my purpose, both as a mum and as a woman, and I’m in a much better place now. But without having the strength to open up, to reach out and admit I needed some help, I don’t think I’d have reached this point in my journey. 

The one thing I’d say to people who are struggling, whatever their situation or circumstances, is to talk. Don’t be alone, don’t be too proud, and reach out to someone. I’m so pleased I did. 

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Inpatient rehab

‘I’ll be forever grateful’

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After 88-year-old Philip Haines had a stroke and lost mobility in his left side, his bespoke rehabilitation enabled him to regain his independence. Here, to mark Stroke Awareness Month, he shares his story of recovery

 

“I’ll be forever grateful.” 

For 88-year-old Philip Haines, who lost mobility in his left side following a stroke, his thanks to those who helped him regain it are limitless. 

Philip, former secretary to the Anglican Diocese of Peterborough, admits being “hit for six” after his stroke, which was caused by a blood clot in his brain. 

His cerebral infarct left him with dense left hemiplegia, meaning he was unable to move his left arm and leg. While the blood clot was successfully removed, the stroke left Philip with cognitive challenges and difficulty in swallowing.

Philip was admitted to Askham Rehab from Peterborough City Hospital in November, where he was assessed by the multidisciplinary team and set clear goals, before being put on a specialist four-month programme specific to his needs.

And now, to mark Stroke Awareness Month, Philip is sharing his gratitude for the team at the specialist neurorehab community near Doddington, as well as to help show the life-changing effects such rehab can offer. 

“The stroke knocked me for six and changed my life dramatically, but every day I was met with a group of very enthusiastic physiotherapists who were trying to bring some life back into my left side,” says Philip, who returned home last month. 

“This whole journey has been a completely new experience, it’s almost like a rebirth. You always try to be positive, but it’s inevitable that you go through periods of feeling low. 

“The team’s enthusiasm helped pick me up during those low points. We got on fine, they were very helpful, and it was a real group effort in trying to bring life back into my muscles.”

When asked if he had any final words for the team that looked after him throughout his rehabilitation, Philip says simply: “Keep up the good work. I’ll be forever grateful.”

During his time at Askham Rehab, Philip was able to make use of the family-run community’s robotics and sensor assisted technology, with it being one of a small number of providers in the UK to offer a specialist robotic-led rehabilitation service. 

He used the MYRO table, a sensor-based surface with interactive applications, to aid upper limb movement and focus on balance, coordination, and cognitive training. 

With strokes being a specialist area at Askham Rehab, Philip also performed mirror therapy, hands-on therapy and functional tasks as part of his tailored programme, which soon led to a significant improvement in his mobility.

“Philip had access to all four of our disciplines; clinical psychology, physiotherapy, occupational therapy, and speech and language therapy,” says Sara Neaves, clinical lead and outpatients service manager at Askham Rehab. 

“It was clear from day one that Philip knew exactly what he wanted to achieve. This enabled us to set patient-centred goals with him, ensuring he was part of the process throughout his journey with us.

“Philip was fully independent before his stroke and enjoyed walking into Peterborough city centre every day for his lunch, so he was determined to get back on his feet. 

“He swiftly improved the mobility of his left upper limb through the use of our robotics and mirror therapy, and was soon able to transfer using a Molift with the assistance of two. 

“He also improved his swallowing through oral motor techniques and no longer needed thickening in his fluids.

“It has been extremely rewarding to see Philip come this far. He had a positive outlook on his rehabilitation journey with us from the offset. 

“His sister has also been an excellent support to him and due to our patient-centred care, his individualised programme has worked to his goals. 

“We’re delighted he’s now able to get back out and head into town again for his lunch outings with friends.”

Aliyyah-Begum Nasser, director at Askham, adds: “Philip’s journey at Askham encompasses what Stroke Awareness Month is all about; highlighting the strategies to improve the quality of life for persons recovering from the condition. 

“Our family-run community, which has more than 30 years’ experience, including 10 years of neurological rehabilitation expertise, prides itself on having comprehensive and specialist programmes in place to ensure those undergoing rehabilitation with us receive structured, high-quality care with a holistic approach.”

For more information on Askham Rehab, visit https://askhamrehab.com/.

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MS

Achieving my ambitions – however long it takes

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When Jessie Ace woke on her last day of university, unable to feel the whole left hand side of her body, her dreams of becoming an illustrator lay in tatters. 

Having already clinched a book deal, which had been her ambition since childhood, Jessie’s future career plans had seemed to be in the ascendancy. 

But from that moment, and with her subsequent diagnosis of Multiple Sclerosis (MS) at the age of only 22, Jessie was forced to delay her ambitions – but was adamant she would never give up. 

And now, eight years on, the determination and positivity which characterise Jessie’s everyday life have resulted in her publishing her first illustrated colouring book for children. 

Already a published author, having created her highly successful My Enabled Warrior Tracker – to help empower people with chronic conditions in accurately documenting their feelings and symptoms – this is the first to showcase Jessie’s talent for illustration. 

The book is being sold via Amazon, and marks the culmination of a long journey to this point – and the beginning of a new chapter as a published illustrator. 

“I have always believed in finding a way to do things, even if they most direct way isn’t achievable,” says Jessie. 

“There have been so many challenges along the way, but you have to believe you’ll get there and do all you can to make that happen. 

“Positivity and belief in yourself is so important, and that runs through my colouring book – the affirmation statements like ‘I am strong’ ‘I am awesome’ and ‘I am beautiful’ are in here, things like that can’t be said from too early an age.” 

Following the colouring book, Jessie has many ambitions for what comes next – but realising the potential challenges which may lie ahead as a woman with MS, Jessie is planning now for her future career. 

“I had a flare-up recently which was really bad, and it made me think what would happen if I couldn’t use my hand in the future, if I could no longer do my illustrations,” she says. 

“So I’m doing as much as I can now, using my creative skills while I’ve got the ability to use them, and will plan for the future so I have work to sell and can continue my career whatever happens.” 

Having seen global success with My Enabled Warrior Tracker, Jessie has gone on to create versions which work with the specific needs of people with fibromyalgia, rare diseases, ME and EDS and challenges with mindset. 

Building on her graphic design roots, the creation of tracker sheets has proved invaluable to those who need to keep track of information between medical appointments. 

“You might have appointments every month or every three months, and you’re expected to recall how you have felt during that time, how your symptoms have presented,” says Jessie, also creator of the acclaimed DISabled to ENabled podcast and Enabled Warriors online group.

“You’re relying on recall bias, which is natural, as you probably won’t be able to describe exactly how you have been during the past several weeks. But that then affects what happens from then on.

“The trackers are proving really useful. The most recent one was the mindset tracker, which was helpful for people during lockdown in creating a positive mindset. I’m so pleased they are helping people.” 

As she plans for her future in illustration, Jessie is considering a host of options. 

“There are so many different pathways I could go down and things to consider, I’ve flipped between so many ideas. I’d like to look at working with an illustration agent, and also potentially licensing my work – but I’m hopeful that selling with Amazon will be a good start,” she says. 

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