Thank you to all our wonderful customers who have helped donate much needed funds for our charity of the year, Brainwave.
Donations are essential for keeping the wheels turning at Brainwave, and to ensure that young children affected by disabilities are given every opportunity to help them achieve their full potential.
Read on to find out what your money is doing to help Brainwave provide vital support to George, Carmel and Clark – three children under their care and who, we are delighted to report are making truly significant progress.
George’s story, told by his dad, Tom
George came into our world in September 2021. From the outset it was not the straightforward delivery that we were expecting. George immediately struggled to transition, struggled to breath and his oxygen levels were low. He was immediately taken to the neonatal intensive care unit. Despite this George fought with the courage and vigour with which he has continued to this day. Whilst on NICU we noticed features that were consistent with Trisomy 21. Days later our suspicions were confirmed with karyotyping. George left hospital 6 weeks later and bar a few minor blips has not looked back since.
As parents, we know George will face additional challenges in life, but we want to ensure that he has every opportunity to reach his potential. We made a promise to George that we would do everything we could to maximise those opportunities.
Through our own research we discovered that the earlier children with Down syndrome receive specialist input from physiotherapy and speech and language therapy, the more likely it is that that individual will maximise their potential. Currently, availability for these specialist services for children with Down syndrome through the NHS is extremely limited and can only be accessed if there are specific developmental concerns, much later in a child’s development.
Whilst researching these specialist services and through the recommendation of other parents with children with Down syndrome we discovered Brainwave.
From the moment we contacted Brainwave they were keen to help. We were very apprehensive before our first visit, as George was only 4 months old, and we were not sure what to expect. We were immediately put at ease, however. We met George’s physiotherapist Mike and play therapist Nikki. From the word go it was evident that the Brainwave team wanted to tailor their specialist input to George’s individual needs. They assessed what George was capable of, set physical goals and provided a ten-point plan for us to follow over the next 5 months. They also offered remote guidance via an iPad if necessary.
We immediately got to work. Initially the tasks were difficult for George, and we felt a little demoralised. But with perseverance and persistence we started to see amazing results. George was progressively meeting his physical goals! We have returned every five months since and have followed the same simple process. George is now able to stand, cruise around furniture and we are working towards him walking.
We wanted to focus on George’s communication, and we have been working closely with George’s speech and language therapist Bethan. Bethan is fantastic and has provided lots of excellent tips to aid George’s communication and encourage George’s speech. Bethan also provides a ten-point plan for us to follow over the following five months, and George really loves communicating through song, books, and Makaton.
We love returning to Brainwave. George loves showcasing his newly learned skills and we are enjoying seeing his progression. Brainwave day is a real highlight for us as a family and we look forward to seeing everyone.
We know George will continue to progress and grow into a brilliant, wonderful young man. It is with thanks to the amazing team at Brainwave that we can be sure that we have done everything we can to allow George to be the best that he can be.
Carmela’s story, told by her mum Lucy.
Carmela developed well in the first year of her life before it became apparent that she had a problem with her gross motor skills. Carmela struggled to walk up hills and was unable to climb or crawl up stairs without help. She was diagnosed with hypermobility and finally after much persistence, with LMNA.
Frustratingly, care providers said that Physiotherapy was a waste of money for a child with a condition that would not improve. This led us to speak to other parents and eventually we found Brainwave.
We attended Brainwave’s Initial Assessment when Carmela was four and what an awesome experience it was! Dawn and Mike, (Brainwave Physiotherapists) were so brilliant, fun, thorough and attentive and explained everything in detail, measuring Carmela’s range of movement in her joints whilst assessing her muscle power ability. They got to know Carmela and incorporated the fun things that she likes to do in a bespoke exercise Programme.
The activities were gentle and controlled mobility exercises which wouldn’t exacerbate Carmela’s condition. These helped stop her joints from stiffening and kept her muscles active, whilst taking care not to cause unwanted fatigue. This all helped maintain independence and keep her movement up as much as possible.
The exercises were printed, and the video demonstrations recorded which helped us and Carmela if she wanted to do the exercises herself. This also meant Carmela’s teaching assistant at school could help with stretches and mobility routine.
Having muscular dystrophy drastically affects fatigue and energy levels. Muscles become very tight and sore if they haven’t been gently activated, so when lockdown happened, we were fortunate that we had an updated Therapy Programme from Brainwave. Carmela continued her exercises whereas others in her position were unable to leave their house to attend physio sessions and maintain their physical health.
It’s three years since we started attending Brainwave. Carmela is still fairly mobile, has made small but promising improvements in her range of movement and has increased muscle strength in some parts of her body. She is such a happy little girl and seeing this improvement has helped boost her self-esteem and self-motivation and she is then willing to continue carrying out the exercises two-three times a week.
Having Brainwave as part of Carmela’s ongoing care treatment means so much, we have a lot of confidence in the Physiotherapists, and the Programme benefits Carmela tremendously as it helps her manage her progressive disease. She looks forward to seeing Mike and Dawn every six months because they make it so much fun! It also gives me as a parent, peace of mind and if there’s anything of concern that’s highlighted, we raise this with her neuromuscular team at the hospital.
To any parent with a child who has a muscle wasting disease, I would highly recommend Brainwave as part of your child’s ongoing care treatment.
Clark’s story, told by his mum Laura
Clark, our 6-year-old whirlwind, was five months old when he started to have epileptic seizures. His diagnosis revealed he was born with 1p36 Deletion Syndrome, a rare chromosome disorder where DNA is deleted and for Clark, abnormalities to the structure of the brain.
Clark has a severe learning disability & development delay, resulting in moderate to severe intellectual and physical disability. Some of Clark’s abilities at six are alike to a one-year-old baby.
Clark is vision impaired, hearing impaired and he has sensory processing disorder. He has epilepsy and a heart condition called Cardiomyopathy. He is nonverbal, so every cry is a guessing game. While termed non-mobile, Clark can crawl for miles for the right biscuit! Limited fine motor movements mean he struggles to manipulate objects…. but he will demolish that biscuit, with finesse!
The NHS are incredible, and Clark wouldn’t be here without them, but when we were advised of a 6-12 month wait to see a physio, we joined the 1p36 UK Facebook Group for advice. Many parents recommended Brainwave and from the first call, we knew we’d found something special.
Brainwave offers hope and purpose. When your child is diagnosed with additional needs, you feel overwhelmingly inadequate. How can we help him reach important milestones? How can we protect him from a world that expects normality? And how can we make sure he is happy, every. single. day? The answer is to find Brainwave.
Brainwave provides safe harbour for desperate parents who need help, to help their children. They transform parents into mini at home therapists who have been educated, advised, and empowered.
From the first assessment we felt at home and the therapists really listened. The therapy team identified that Clark needed help with mobility, communication, sensory integration, engagement, and independence. The Programme was tailored in small, achievable steps, including every area where Clark needed help to develop; a one stop shop.
Having small activities to work on included the family and gave us all a positive way to help him, and an outlet for that endless love that was sometimes difficult to share with a baby (who couldn’t physically tolerate cuddles or understand how much he was loved through smiles and affection). This has now changed, and Clark loves Mummy cuddles and kisses and rough and tumble with Daddy.
Clark’s mobility has developed exponentially, and he is surpassing all expectations of limited movement. Clark can crawl and bottom shuffle between rooms, up and downstairs. With support, he can stand from kneeling independently, meaning that Clark has choices and is happier, especially when moving to the kitchen to give ‘I’m hungry’ hints!
Clark’s communication expands daily and we’re working towards speech and language with Claire this year. Currently, Clark can make choices between objects and photos which is extremely empowering and gives him a voice. He is more vocal every day and VERY expressive if you choose the wrong episode of Peppa Pig!
Makaton has been a game changer and the team have taught us ways to communicate which we’ve passed onto our family who love such meaningful interaction, resulting in a less frustrated little boy.
Clark has been on a journey in terms of sensory processing, things take his brain longer to process and he needs extra time to coordinate thoughts and actions. Mervin has devised a brilliant sensory programme which includes swinging, bouncing, rolling, playing with pasta, play doh and slime – 6-year-old boy heaven!
Clark has found all these things tricky, but with Brainwave’s ethos of repetition, repetition, repetition and encouragement, we are making huge progress which open up possibilities and experiences for him. We took Clark bowling recently, an almost unimaginable activity in the past. He coped well with the flashing lights, loud music, the crowds, and noise. He even got a strike!
Brainwave has changed my life. Our son’s life, our family’s life, and the way we see our once bleak, now bright future. They have helped us achieve what we feared impossible. Clark’s world has opened up and continues to grow, thanks to their commitment to helping children with disabilities reach their potential and become their very best selves.
You can choose to donate to Brainwave at the Hippychick checkout when buying a product, or you can donate direct at Make a Donation – Brainwave
