> ## Content Index > Fetch the complete content index at: https://www.thestaffordshiresignal.co.uk/llms.txt > Use this file to discover other available public pages before exploring further. # Hannah's Story - URL: https://www.thestaffordshiresignal.co.uk/hannahs-story/ - Published: 2026-08-24T09:28:20.000Z - Updated: 2026-08-24T09:28:20.000Z - Description: Follow Hannah's journey as she finally receives a life changing diagnosis 38 years after her premature birth. - Author: Bethany Lockett - Tags: Culture & Community I was contacted by Hannah after my personal story was aired in the February edition of the Staffordshire Signal. Hannah was keen to share her remarkable story with me, and I feel it’s a poignant story and well worth the read. Born at just 29 weeks by emergency caesarean section, weighing just 1.28kg (2.8lbs), Hannah began life in crisis. She spent the first six weeks of her life in a Special Baby Care Unit, where a CT brain scan revealed several cerebral (brain) bleeds believed to be “regular occurrences in low birthweight babies”. At 4 months of age, shortly after discharge, she developed RSV Pneumonia, a lower respiratory infection, causing inflammation and fluid in the lungs’ air sacs and as a result she required re-admission for ventilation. Once she recovered, she was discharged home under the care of a Paediatrician until the age of 3 yrs. From the very beginning, something didn’t seem quite right. Hannah’s left leg “had a mind of its own”, and instead of crawling she could only shuffle on her bottom. She finally began walking around 14 months of age. Her mother, already overwhelmed, found little emotional support from the family’s health visitor, who only “appeared to lack empathy”. At the age of 3, Hannah was recommended for squint surgery as she showed significant signs of a Convergent Squint from birth (misalignment and movement of one or both eyes and difficulty focusing at close range-often due to neurological or developmental difficulties) and she was managed by the Orthoptic team for her visual disorder, until it was advised that surgery was required. She was identified to be right-handed but left eye dominant, causing crossed laterality or inconsistent hand -eye co-ordination and had weak visual and spatial awareness skills. Early childhood settings were a struggle for Hannah: playgroups and nursery felt too loud and chaotic. In primary school, she battled with balance and coordination difficulties. Her parents despite showing concern were frequently dismissed by teachers suggesting Hannah was just “simply shy and lacking confidence”. It took one observant Year 3 Primary school teacher however to change the trajectory. Recognising that Hannah needed more than reassurance, the teacher pushed for an educational and health assessment. By the age of 11 Hannah was then issued with a Statement of Special Educational Needs, with some one-to-one maths support and six weeks of dedicated physiotherapy and occupational therapy being advocated, with the addition of a referral to the Visual Impairment Education Service. She was provided with a Typewriter to help develop her fine motor skills and gain accuracy with the ease of recording information. After her therapies were completed, she was simply advised to continue with a programme of home exercises and was discharged despite her gait still appearing “awkward and stiff”. Still, there was no unifying explanation and what no one seemed to do was join any of the dots. Hannah often found bruises on her left ankle without remembering any injury. Her GP requested blood tests but did not investigate further when these showed no abnormality. All that remained was a jumble of ideas from various sources but no clear name for what she was living with. High school was a very difficult time, and it felt brutal. Games teachers showed little understanding of why she struggled in the gym and on the sports field and she often felt ridiculed in front of her peers. Her unusual gait made her a target for bullying, and classmates grew impatient with her physical differences. That impatience, she says, has followed her into adulthood. Despite this, Hannah persevered and gained 4 NVQ’s at college and finally secured a NVQ level 3 in Supporting Teaching and Learning in Schools, but only managed to secure part-time posts as a play worker. She worked as a volunteer in 2 schools whilst studying, but neither school considered her for a paid position, and she was only able to gain employment in morning and after school clubs. Due to struggling with higher levels of education and learning and with schools now asking for postgraduates in Teaching Assistant roles Hannah feels she has become obsolete. She has since studied an online NVQ Level 2 certificate in Business Admin and Customer Service as she discovered she preferred remote work, but this has come with a cost as she has quickly become more socially isolated. In her twenties she began driving lessons, hoping for greater independence. Instead, she developed double vision. Her eye surgeon diagnosed Optokinetic Nystagmus (involuntary eye movement triggered by observing large moving visual scenes such as looking out of a window). One suggestion was that she drive with an eye patch, but Hannah felt this was unsafe, so stopped driving altogether. It was another blow to her independence, her confidence, and her career prospects. As she still had no definitive diagnosis, application forms became a minefield to complete, as she never knew what to put. With her symptoms aligning closely with dyspraxia and dyscalculia she endeavoured to seek answers for her condition herself. In October 2024 at the age of 38 years, she obtained a private Consultant Neurology opinion. After a 40 -minute appointment, a detailed history and physical examination, with her mother by her side- the consultant gave her what decades of services had not: a clear diagnosis of Cerebral palsy, predominantly affecting her left side. For Hannah and her parents, the news was both devastating and validating. Despite feeling deeply let down by professionals and frustrated with the delay in time, the diagnosis has become a positive turning point in her life. It has finally given her the ability to explain her difficulties to others and to understand her own experiences with greater clarity. The response from primary care has felt underwhelming with the GP not seeming to recognise the need for follow up, or even discuss the diagnosis further and offer signposting for support that Hannah may require. She has had to navigate services herself; after finding out she did not meet the criteria for social care support. Now with help from the Citizens Advice Bureau, she has eventually secured a basic level of Personal Independence Payment (PIP). After 11 years of working in various educational settings Hannah was sadly made redundant during COVID and has been out of work since, only now managing to secure volunteer work for charities, data inputting from home. She has found it repeatedly difficult to find employment as she is constantly told that she lacks experience. Her story raises uncomfortable questions about continuity of care for premature babies, the recognition of cerebral palsy in those with milder or unilateral symptoms, plus the support available to adults who fall between service thresholds and the hidden agenda of struggling to find suitable employment when living with a disability. Hannah, however, is determined that her experience should serve as more than a cautionary tale. To families with babies in neonatal intensive care, she offers clear advice: “Voice any concerns straight away and don’t be palmed off with platitudes. Keep questioning anything that doesn’t seem right. It is about your precious child, whose early birth has turned your world upside down, and you deserve to be heard.” To children born prematurely who are now struggling at school, she wants to send hope: “You are special and life will get easier. Don’t be afraid to tell others how you feel. Speak to your parents and teachers. Real friends will understand.” For adults living with undiagnosed conditions, or misunderstood disabilities, her message is one of self-worth and discernment. “You may have insecurities due to lack of understanding but seek out people who are genuine and compassionate. Don’t waste time on people who are not.” She also urges transparency and confidence in the workplace. “When applying for employment, state your disabilities. Many companies have a Disability Confident policy. Don’t forget to tell your prospective employer about your strengths and why you would be an asset to their company or establishment. Just because I need more time to do certain things it doesn’t mean I’m not capable”. Hannah’s journey- from a neonatal intensive care cot to a late diagnosis nearly four decades later- is a story of systemic gaps, missed opportunities, and quiet resilience. It is also, she hopes, a catalyst for change. “I hope my story will help others to obtain the answers they deserve,” she says. Statistics show that Cerebral Palsy currently affects 1 in 400 children in the Uk and is the most common motor disability affecting young children. Approximately 1,800 children are diagnosed every year, and 160,000 people now live with the condition in the UK. Boys are more prevalent and babies born before 37 weeks have a higher risk, with the risk increasing with earlier gestational age. Infants weighing less than 3.3 lbs are significantly at higher risk. 80% of cases are caused by prenatal events, where the brain has not developed appropriately or is damaged, from a brain bleed, lack of oxygen or infection caught during pregnancy or premature birth. It can occur before, during or shortly after birth but is not always obvious until after 1-2 years when significant development milestones are not reached. The condition affects movement, muscle tone or posture and common symptoms include stiff muscles (spasticity), weak limbs, uncontrolled/ awkward movements, walking on tip toes, difficulty with balance and co-ordination, difficulty with swallowing , speaking or vision. In many cases the cause is unknown but It’s a permanent condition that does not worsen over time, but the severity can vary significantly. If you have any concerns regarding a child’s development, please raise these concerns with a health visitor or GP . Symptoms like those of cerebral palsy can have a number of different causes and may not be a sign of anything serious, but specialist intervention may be necessary to determine a diagnosis. (NHS. Uk, Sense.org.uk, Cerebral Palsy Alliance Research Foundation) ![](https://storage.ghost.io/c/3b/48/3b482e3b-bd85-4cd0-bf5d-b4c28e10d60b/content/images/2026/04/Hannah-1.jpg) Hannah Hannah would love to hear from you if you have had a similar life experience, or to hear your thoughts on her story, so has asked us to include her email address. Please feel free to reach out: hannah.johnson12@yahoo.co.uk ### Join The Staffordshire Signal on WhatsApp Never miss a single breaking update, local news story, community event, or deep dive. See everything happening in Staffordshire first, straight to your phone! [ Get Instant Updates ](https://whatsapp.com/channel/0029Vb7ZsQULNSa5fg83uQ1y?ref=thestaffordshiresignal.co.uk) Explore the heart of our countyUse the interactive map above to discover local landmarks, heritage sites, and community-vetted spots. Every interaction helps support **The Staffordshire Signal’s** mission to keep local news free and independent. 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