The Jemima Layzell Trust
2013 In December, The Jemima Layzell Trust was founded
2014 The Trust registered with HMRC to qualify for Gift Aid. Charity number: EW14268
2015 In February Michael Morpurgo become the Trust's Patron.
2015 in June we launched our inaugural Creative Writing Competition judged by our Patron.
2015 in August the Trust registered with the Charity Commission. Charity Number: 1163173
2015 in November we donated £1,144 to match fund Ethan's treatment at BIBIC. Ethan suffered a stroke in utero.
2015 in December we donated £12,500 to Bristol Children's Hospital for a new EEG machine, this vital piece of equipment registers brain activity in trauma victims.
2015 in December we donated £1,000 to Tyler's family via CBIT. Tyler fell from a height of 12 ft straight onto his head suffering numerous bleeds to the front of his brain.
2016 in March we donated £350 for a computer tablet and bubble machine to Charlotte via CBIT who suffers global ischemic encephalopathy and has cortical visual impairment as a result of a seizure.
2016 in April we donated £350 for a computer tablet to Mohammed via Marthacare who suffered seizures following complications after a burning accident.
2016 in May we donated £1,700 to Amber for a cycle seat adaptor who suffers multiple seizures daily (30 recorded in one day) owing to a condition called Lishencephaly.
2016 in Summer Chris Holland ran Creative Writing workshops in schools and the Brewhouse theatre to highlight organ donation.
2016 in July we donated a computer tablet to Ethan at BCH. Ethan suffered encephalitis leaving him with communication difficulties.
2016 November we donated £1,152 of sensory equipment to Harry via CBIT who suffered gun shot wounds to the head.
2016 November we donated a computer tablet to Q who suffered brain injury as a result of meningitis.
2017 February we donated two specialists seats for the neuro-rehab ward at BCH
(MYGO seat £2,603 and the Lecky Squiggles system £2,170.80)
2017 May we donated computer tablets to Charlie who suffered a stroke while having cardiac surgery and to Aiden who has a brain tumour.
2017 May we donated £1144 to fund Mia's assessment, re-assesment at BIBIC and treatment at the Johansen Individualised auditory stimulation programme.
2017 June we donated computer tablets to Dylan who suffered a choking incident and Anwaar who was a car accident victim.
2017 June Damien Boyd, crime author delivered three Creative Writing workshops to highlight organ donation.
2017 August we donated a computer tablet to Nell who has been diagnosed with a progressive loss of brain function owing to a mitochondrial disorder called ‘TWNK’
Registered Charity number: 1163173
The objectives of the charity are:
To help fund the provision of treatment and care for young people (under 18’s) suffering because of brain injury.
To raise awareness and educate the public (especially young people) about the risk and impact of brain injury.
To encourage people to sign up to the NHS organ donor register.
From hospital equipment, to dark rooms and iPads we're proud of how much we've raised the last few years so that we've been able to help children with brain injury.
Our first big donation was an EEG machine to Bristol Children's Hospital (BCH). This amazing equipment is helping to save time so that consultants are alerted to any changes in their patients brain activity, even when not physically at the hospital, and really saves lives.
Since then we have also donated two specialist seats, (a MYGO Modular Mobility Seating for children and teens with special needs, and the BEE seating system for 3 month olds to 5 years), as requested by nurses on BCH Neuro-Rehab Ward.
These chairs are brilliantly designed to not only aid posture and motor skills, but ensure that bed-ridden children can be included in activities, and therefore help stimulate their social interaction, a vital part of recovery from brain injury.
We have also donated sensory equipment: tablets, bubble lamps, dark dens, play mats and bath toys, plus unique therapy from the British Institute for Brain Injured Children, and access to the Joansen IAS auditory stimulation programme. This programme involves listening to music, specifically designed to stimulate the nerve pathways into and within the brain - in particular the areas dealing with language.
All our children are referred by either their occupational therapist, nurses and doctors on the neuro-rehab ward at Bristol Children's hospital. Or other charities like Marthacare (now part of the Wallace and Gromit Grand Appeal) Child Brain Injury Trust and the British Institute for Brain Injured Children.
We are always keen to hear from new lead professionals from all over the country so we can widen our geographic reach.
The Yellow House
We knew Jemima wanted to be an organ donor because we had talked about it the week before she died. The recent death of a friends’ brother prompted various debates about organ donation, euthanasia and methods of burial. We therefore knew what her wishes were.
A 5-year-old boy received Jemima’s heart; a 14-year-old boy received her lungs. Her liver was split and shared between a 10-month-old baby boy and a 5-year-old boy. A 3 ½ year-old girl received a small bowel transplant and an adult female received her pancreas. A 24-year-old man and a 19-year-old man both received a kidney each. As well as her organs Jemima also donated her corneas, which in the future will give sight to two people, in addition to liver cells which were extracted for future use as an alternative to liver transplantation when patients are too sick to undergo a full transplant.
To register visit www.organdonation.nhs.uk
To find out more visit www.nhs.uk
We focus on encouraging children to talk about organ donation to their parents/guardians because if Jemima hadn't we wouldn't have known her wishes. This is so important because children can usually only receive transplants from other children. Our creative writing competition is an integral part of our Awareness and action campaign, please have a look here. Being faced with the death of your child is so devastating, but donating can help heal that loss.
Please sign up now.
Also known as cerebral aneurisms , there are three main types: saccular (berry), fusiform and dissecting.
I in 50 people will develop an aneurism, 40% of these will die.
Un-ruptured brain aneurisms often have no symptoms at all. However, if the aneurism is over half an inch in diameter it may press on the brain or the nerves stemming out of the brain, resulting in some or all of the symptoms below. Jemima’s was a giant dissecting aneurism deep in the left side of her brain. If she had lived this would have severely affected her communication and the right side of her body. A ruptured aneurism causes extreme pain (the worst headache of your life) loss of consciousness, nausea, vomiting, change in mental status, seizures, plus the symptoms below. 4 out of 7 people surviving a bleed will have disabilities. Accurate early diagnosis is critical.
· Headache or pain behind or above the eye (can be mild or severe) · Dilated pupils · Blurred or double vision, possibly with drooping eyelids · Weakness or numbness, dizziness · Difficulty speaking
Most of our facts and figures come from www.bafound.org
mission & vision
The Trust is comprised of family, friends, and parents of Jemima’s friends. All shattered by our loss and channelling our love into making the world a better place on Jemima’s behalf.
Being a small charity we are all volunteers.
We currently have six Trustees and a small committee. There are also many individuals who champion our cause in their own way, either promoting our events, and campaigns, organising charity pot collection and putting on their own events.
Every single one of them is working hard to raise funds to support young people suffering from brain injury or trauma, who might need help with their physical rehabilitation and, or their mental wellbeing.
If Jemima had survived, the ruptured anuerism would have severely affected her communication and the right side of her body.
Recovery from an un-ruptured aneurism is generally quicker than for a ruptured one. Physical therapy and speech therapy may be needed. Patients may suffer from various symptoms including fatigue, localized pain and problems with balance.
Depression is very common, because of big life changes. The inability to do things they used to, leads to feelings of helplessness and hopelessness. Plus, loss of emotional control, low self esteem, insomnia, relationship issues and loneliness can also be a problem.
The equipment we provided helps engage and motivate the children to get better, faster. It encourages them to interact, and to regain mobility and cognitive skills. The lead professionals we work with say it makes a proven and demonstrable difference to each child's progress, which is really rewarding for all of us involved with the Trust