Innovation Centre help Livia gain independence

Mum Alanah recently approached our Innovation Centre with a challenge that would help maintain her daughter’s independence while keeping the whole family safe on shopping trips.

We received Livia’s diagnosis of cerebral palsy just after she turned 2, and when I was 8 months pregnant with my second child. Suddenly the logistics of looking after two children had become more involved. I knew Livia was struggling to walk, but I thought that after a bit of help she’d learn and would be running alongside the newborn’s pram or riding on a buggy board.

Initially after our second’s arrival things were pretty straight forward. Livia continued to ride in her stroller and the second was carried in a sling. When Livia did want to get out and walk she would hold onto the back of the stroller to steady herself and help me push that along. This resulted in lots of tripping and falls and was frustrating for all of us.

When our second was 4 months old Livia’s Kaye walker arrived. This was very exciting and gave us a step up in our independence and ease of getting around. Livia was willing to take short journeys with it, which was great when popping into shops that we could park outside or walking into the park from the car, or visiting a friends house. But anything further than a few minute walk was daunting for her and time restrictive for me. So the pushchair came back out, but how was I going to carry a newborn, push a stroller and bring her Kaye walker should she want to walk?

I felt terribly guilty if I didn’t bring her walker along. I felt I was stopping her from being independent when all of her friends and others her age were up and running freely. I purchased a tandem double pushchair and intended to carry the walker. We did one trip like this, ouch! My shoulder was so sore from where it had dug into me that it was obvious that this wasn’t going to be an option. So I went back to carrying the baby and slotted the walker onto the back seat of the pushchair.

Now the newborn was getting heavier and spending a lot of time ‘bouncing’ in the carrier. I’m not the biggest built person either, so carrying her everyday whilst pushing a toddler, all of the essentials you need and a Kaye walker was getting really tricky. There was also the challenge of when it rains or is really sunny. I don’t have a rain cover for the baby  carrier and we all know how hard it is encourage a baby to keep a sun hat on, so I really needed her to go back into the pushchair. I am part of a cerebral palsy support group on Facebook, so I posted on there asking other mums what they do. A lady responded telling me to give Cerebra a call.

I spoke to Ross Head in the Innovation Centre and explained my predicament. He told me he’d made a back carrier for someone before. He took the walker size and said it’d be with me in a few weeks. About 5 weeks later he emailed to say the carrier was on its way and how to use it. I am absolutely delighted with it. Ross took a standard backpack and added some straps and metal hooks to it. The walker hooks over the top and is secured in place by some bungee cords. At the bottom he has added some velcro straps that secure the walker from bouncing around when I walk. Once strapped in place it’s hardly any weight at all. I now can keep both the children in the shade or out of the rain, they can snack and play with toys whilst I get us all to our destination with relative ease.

I am now racking my brains of how to challenge Ross further, what else isn’t on the market that could help make my family life easier…? I hope my story gives someone the knowledge to give Ross a call and talk through your dilemma. He’s a wizard! Thank you Ross and Cerebra.

If you have a challenge that you think the team at the Cerebra Innovation Centre can help with, get in touch! You can contact them via email at cic@cerebra.org.uk or by phone on 01792 483688.

Six year-old Jake-Junior to run for Cerebra

Jake-Junior

Jake-Junior

When Jake -Junior cheered his dad from the side-lines as he completed the London Marathon, there was only one thing he wanted to know – how he could get his hands on a medal too?

Six year-old Jake -Junior has ADHD and sensory processing difficulties, which leave him with a lot of anxiety. Due to his condition, Jake-Junior has lots of energy and is always on the go but he can sometimes have problems with impulse control and can get frustrated very quickly, especially at school.

Despite the challenges he faces every day, Jake -Junior wanted to follow in the footsteps of dad Jake and take on his very own running challenge to help children who have conditions like his.

Jake-Junior showing his run time

Jake-Junior showing his run time

His Mum Nicola explains why Jake – Junior decided to fundraise for us: “Cerebra helped us with his sleeping issues, making sure we all get a good night’s sleep, and gave advice on his sensory problems. They also have a fantastic library to lend out toys and books”.

His energy has meant that he has been doing extremely well with his training. Mum Nicola said: ‘Jake-Junior doesn’t have a “stop button” – if he’s awake, it’s time to run! He’s already starting to train for his 5k run with sit-ups, push ups and short runs.

“Me and his Daddy are immensely proud. He’s such a lovely boy and a bit of a charmer. All his teachers love him! He has been training every day so far and even wanted to do the race on his own though we thought it was best if dad went along!”

Jake-Junior will be running Birmingham’s 5k Big Fun Run on 8th September and you can help him reach his fundraising target through his Just Giving page.

BorrowBox is here!

We are so pleased to offer a new service in our library.  You can now borrow ebooks and audiobooks from us with BorrowBox. You can read or listen to books using the BorrowBox app on your smartphone or tablet or from your computer on their website.

Here are a couple of the books you can borrow.

The Out-of-Sync Child by Carol Kranowitz

The Out-of-Sync Child is very popular book in our library and now you can borrow it as an audiobook.

From the Trade Paperback edition:

“Does your child exhibit over-responsivity–or under-responsivity–to touch or movement? A child with SPD may be a “sensory avoider,” withdrawing from touch, refusing to wear certain clothing, avoiding active games–or he may be a “sensory disregarder,” needing a jump start to get moving.

Over-responsivity–or under-responsivity–to sounds, sights taste, or smell? She may cover her ears or eyes, be a picky eater, or seem oblivious to sensory cues. Cravings for sensation? The “sensory craver” never gets enough of certain sensations, e.g., messy play, spicy food, noisy action, and perpetual movement. Poor sensory discrimination? She may not sense the difference between objects or experiences–unaware of what she’s holding unless she looks, and unable to sense when she’s falling or how to catch herself.

Unusually high or low activity level? The child may be constantly on the go–wearing out everyone around him–or move slowly and tire easily, showing little interest in the world. Problems with posture or motor coordination? He may slouch, move awkwardly, seem careless or accident-prone.

These are often the first clues to Sensory Processing Disorder–a common but frequently misdiagnosed problem in which the central nervous system misinterprets messages from the senses. The Out-of-Sync Child offers comprehensive, clear information for parents and professionals–and a drug-free treatment approach for children.”

Mindful Parenting for ADHD: A Guide to Cultivating Calm, Reducing Stress, and Helping Children Thrive by Mark Bertin

From the Trade Paperback edition:

“Written by a pediatrician and based in proven-effective mindfulness techniques, this book will help you and your child with attention deficit/hyperactivity disorder (ADHD) keep calm, flexible, and in control.

If you are a parent of a child with attention deficit/hyperactivity disorder (ADHD), you probably face many unique daily challenges. Kids with ADHD are often inattentive, hyperactive, and impulsive, since ADHD affects all of self-management and self-regulation. As a result, you might become chronically frustrated or stressed out, which makes caring for ADHD that much harder. In this book, a developmental pediatrician presents a proven-effective program for helping both you and your child with ADHD stay cool and collected while remaining flexible, resilient, and mindful.

Bertin addresses the various symptoms of ADHD using non-technical language and a user-friendly format. In addition, he offers guidelines to help you assess your child’s strengths and weaknesses, create plans for building skills and managing specific challenges, lower stress levels for both yourself and your child, communicate effectively, and cultivate balance and harmony at home and at school.

If you are a parent, caregiver, or mental health professional, this book provides a valuable guide.”


Full details of how BorrowBox works and how to sign up are on our BorrowBox page. You can also view the full library of ebooks and audiobooks here.

Arctic Ride Alaska!

Gordon with his brother Robbie

This summer Cerebra Ambassador Gordon Stuart will attempt his latest epic charity motorbike challenge. He will have just 12 days to take on the 5000 mile ride through Canada, Alaska, and the Arctic. 800 miles of this will be off-road when takes on the notoriously dangerous Dalton Highway, made famous in the documentary TV series ‘Ice Road Truckers’.

Gordon’s project, ‘The Arctic Rider’, is an on-going series of charity motorbike challenges. Gordon explains: “It started in 2011 as a charity ride to the Arctic Circle that didn’t really go to plan, and has become a near obsession with the Arctic, an obsession with riding a motorbike, and an obsession with helping charities close to my heart”.

In 2011 he crashed his motorbike in Sweden en route to the Arctic, raising £1,300 for Cerebra. In 2014, he rode 6,000 miles solo to Nordkapp in the Arctic Circle, raising over £5,000 for Cerebra. And in 2016, he completed the UK ‘Iron Butt challenge’, riding the length of the UK from Lands End to John O’Groats in 18 hours, raising over £1,800 for Tiny Lives Trust.

Causes close to his heart

This year’s challenge is the biggest yet! Gordon is attempting to raise £4000 for Cerebra and Newcastle based charity The Tiny Lives Trust. Gordon explains why these charities are very close to his heart:

“My little brother Robbie suffered severe brain damage from a near miss cot death when he was just 9 months old. Cerebra have supported my family ever since and I am proud to be a fundraiser and Ambassador for a charity that changes so many lives for the better. Both of my own children were born prematurely and spent time in SCBU. The Tiny Lives Trust helps to care for premature and sick newborn babies, their mothers, and families in SCBU by providing a range of facilities, staff, and equipment.”

Speaking ahead of his challenge Gordon said: “Only a few weeks ago I wasn’t even sure I was going to be able to do the trip this summer. My youngest, Hugo, has been in and out of hospital this year and was in only few weeks ago, which threw my trip into doubt. While I’m committed to the great charities I support, family always comes first. After some long conversations with my (long suffering biker-widow) wife Kirsty, we agreed that the right thing to do was to press ahead with my trip and raise even more money to help other children like Hugo and his big sister Islay. I must say The Arctic Rider project would be nothing without the support from Kirsty. This time she’ll be holding at fort at home for 3 weeks with a pre-schooler and a baby, while I’m fighting bears and mosquitoes in northern North America. Those who’ve been following since my early trips will remember I left a 6-month pregnant Kirsty while I sent off for Nordkapp in 2014 – what a lass!”

The Trip

Gordon will be riding 5,000 miles in 2 weeks to cross Canada and Alaska including the notorious Ice-road ‘The Dalton Highway’, deep inside the Arctic Circle – described as 800 miles of gravel, mud, mosquitoes, mountain ranges, and angry truckers!

To complete the ride he will to travel to Calgary, Canada to meet his specially modified off-road Adventure motorcycle (provided by Suzuki). He will then travel across Canada and Alaska to take on the ride and the Dalton highway. ‘The Dalton’ is a 414 mile stretch of mostly gravel road which was designed as a supply road to support the Trans-Alaskan Pipeline. The road is often cited as one of the world most dangerous roads due its remoteness, road quality, and demanding Arctic weather.

The trip will be a tough one. Phil Freeman, a veteran of 10+ rides up the Dalton and Alaskan native describes the ride: “Every year motorcyclists are killed on the Dalton Highway. There are relatively no places to stop along the way: no gas, no convenience stores, no McDonalds. There are stretches of up to 245 miles without gas. On a good day, you can ride it wide open. On a bad day, you can go home in a helicopter. You are literally riding through pristine wilderness. Welcome to the food chain.”

Gordon will be setting off from Newcastle on 26th June and you can follow his preparations and progress on his blog.

If you’d like to support Gordon please visit his Virgin Money Giving page.

Tiny hats for tiny babies

One of our dedicated fundraisers, Sam Elliott, has just knitted 39 baby hats for premature babies on the Neonatal Ward at Leeds General Infirmary.

Sam Elliott has worked in our fundraising department for just under a year. Having recently learned how to knit, she saw a post on Facebook asking for hats for premature babies. As we sponsor research at the University of Leeds into the prevention of premature birth, Sam decided to knit her hats for the hospital we work with.

Tracy Elliott, Head of Research & Information, and Imogen Morgan, Trustee, present the hats to the Neonatal ward

She created 39 hats in all different colours and sizes. It took her a couple of months with each hat taking about 2 hours to complete. Sam said:

“I love raising funds for Cerebra and through this project I was able to help our work in another way”.

Independence for Myles with our Oxygem

Our creative team of designers at our Innovation Centre and our Oxygem recently helped Myles to become more independent. Myles’ mum Vickie tells us more – and take a look at  the great video at the end!

We are a family of 4 – me, my husband Neil, Noah who is 6 and Myles who is 2 1/2.  Myles was born a seemingly healthy full term baby boy. But he struggled to thrive and was always catching viruses, we seemed to be at the doctors every week. He developed pneumonia at the age of 5 months and was hospitalised. We were sent home with medication but over the next few weeks he deteriorated and ended up being taken into intensive care where he required ventilation.

It was thought that Myles would be able to be weaned off oxygen as he had suspected broncholitis. After weeks in hospital trying to wean him it was obvious something else was going on with his lungs. For the rest of the year he was in and out of hospital having investigations and surgery. They decided to do a gastrostemy for additional nutrition as growth was a vital part of his care. After a lung biopsy and genetic screen he was diagnosed with Surfactant Protein Deficiency Type C. This is a condition which results in the lack of tension in the alveolar sack minimising the surface area for gas exchange.

Myles has been dependent on oxygen ever since meaning he always has to have an adult with him to carry the oxygen cylinder. Myles has done amazingly well hitting his milestones albeit a little delayed. He has started going to nursery just a few hours a week so I wanted to try and find something that would give him a little more independence.

I spoke to our care teams but there didn’t seem to be anything available through the NHS or privately. I even started to look at portable concentrators as these are much lighter but unfortunately these work on a pulse flow rate. A child’s breath intake is not strong enough to trigger the release of oxygen so these are only suitable for adults.

Through searching the internet I came across Cerebra and your Innovation Centre. The Oxygem looked perfect for Myles as he’s strong enough to push a trolley and it would enable him to have a level of independence. We were so overwhelmed he was accepted to receive one of the prototypes. He took to it straight away and now enjoys walking round the park with it and walking on the school run.

Myles’ condition means that as he grows he will hopefully be able to have stints off the oxygen. But it’s during levels of activity that he really needs more. The Oxygem enables him to move around with the cylinder when he needs it most. He is due to start school September 2019 and I think the Oxygem will really allow him to integrate with his peers. The fact that the handles can be changed for longer ones as he grows is brilliant.

Watch Myles in action

Can our Innovation Centre help your family? Don’t hesitate to get in touch for a chat.

Preventing neonatal brain injury and childhood disability

The main objective of the Cerebra Perinatal Research Centre at the University of Leeds is to make a difference in the lives of expectant mothers and their children. In this article we take a look at why this research is important, the progress being made and the longer term impact of our research.

Cerebra Perinatal Research Centre: preventing neonatal brain injury and childhood disability

While most women can enjoy a healthy and uncomplicated pregnancy, there are three major adverse outcomes that may unexpectedly occur:

  • preterm birth (babies born more than 3 weeks early),
  • growth restriction (baby has a lower birth weight than expected), and
  • pre-eclampsia (high blood pressure in pregnancy).

Worldwide, and in the UK, these adverse outcomes affect one in five pregnancies. Alone, or in combination, they may have serious consequences for the mother and/or her baby.

Importantly, they are the leading causes of neonatal brain injury and later childhood disability (both cognitive and motor, ranging from poor academic achievement through to the spectrum of cerebral palsy). For many of these babies there is a need for additional neonatal support and care, especially for those born preterm.

Ideally, we would be able to predict which mothers are at risk and put in place preventative strategies. However, identifying at-risk mothers is difficult as the reasons for these adverse outcomes are complex and poorly understood.

Why our research is important

We are a research group focused on understanding the causes of these pregnancy complications. Since 2007 we have been engaged in identifying the pre-symptomatic detection of these conditions and promoting preventative strategies. Thus reducing the incidence and burden of childhood brain injury.

Our research has informed clinical practice, inspired multi-professional teaching, and led to a reduction in one of the key adverse outcomes, preterm birth. Over the period of Cerebra’s funding of the Centre, this work has led to a fall in preterm birth rates, with almost 350 fewer babies each year being born too soon.

The development of the SCOPE cohort supported by our first Cerebra programme grant confirmed the usefulness of a biomarker called placental growth factor. In combination with other clinical risk factors this enhanced prediction, improved outcomes, and reduced the need for unnecessary preventive treatment. The use of this biomarker has since been recommended for use in clinical practice (nice.org.uk/guidance/dg23).

Our research has always concentrated on ensuring effective clinical practice. Without successful implementation of research findings there will be no reduction in the numbers of babies born at risk of brain injury and later disability.

The research need is greater for those women whose risk status only becomes evident after an adverse outcome and for some conditions where no suitable preventive treatment currently exists. It is for these women and their babies that we need to develop new and innovative strategies that can lead to effective preventive interventions.

Some key indicators of progress are:

  • We have recruited more than 3,000 mothers for our prospective biobank TWS (Thousand Women Study)
  • We have published 26 research papers in peer-reviewed international journals and regularly present at national and international conferences
  • We have established partnerships and key collaborations with national and international groups, universities and organisations such as: Kings College London, the University of Manchester, the Royal College of Obstetricians & Gynaecologists, Baby Lifeline, Action on Pre-Eclampsia, Harvard University, SCOPE (the international pregnancy biobank consortium), and InterPregGen (genetics of pre-eclampsia) to name a few
  • We contributed to the NICE Diagnostics Committee’s report on the use of PlGF (placental growth factor) in the diagnosis and management of pre-eclampsia (nice.org.uk/guidance/dg23), and the upcoming recommendations on near patient diagnosis of preterm labour (nice.org.uk/guidance/indevelopment/gid-dg10017)
  • Our Family Integrated Care neonatal program received national recognition for their work, featuring on the BBC’s Victoria Derbyshire program
  • Our Research Midwifery team were an integral part of the highest-recruiting Reproductive Health & Childbirth specialty group in the NIHR-Clinical Research Network for 2016/17

Longer term impact of our research

The main objective of the Cerebra Perinatal Research Centre is to make a difference in the lives of expectant mothers and their children. Our research focuses on understanding pregnancy complications and developing diagnostic/preventive tools. One of our key objectives throughout the programme was the assembly of a comprehensive demographic, clinical and tissue biobank, the Thousand Women Study. This information will be used to characterise healthy pregnancy and help devise predictive and preventative strategies for adverse outcomes. With Cerebra’s funding we have recruited over three thousand women in mid-pregnancy that will enable us to carry out both discovery and validation studies into potential biomarkers and establish new predictive tests, but also evaluate the reliability of those proposed elsewhere.

We are also using innovative imaging technology that allows large areas of the placenta to be surveyed and visualised in 3D. By using this digital platform we will be able to perform a comprehensive analysis of healthy and diseased placentas and compare for structural or morphological differences. We hope to further our understanding of placental function in pregnancy complications and identify markers of susceptibility to disease, that could be used a prognostic tools.

We are also currently leading a clinical trial, the Minidex study, which will provide much needed data on the safety and efficacy of very low doses of steroids in preterm/low birth weight infants who are at particular risk of developing lung and brain injury.

Our research is important for families, and can make a huge difference to the lives of expectant mothers and in their children by reducing/eliminating the incidence and impact of brain injury.

You can find out more about our research programme and watch a short video here.