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Home > Testimonials > Helping Families

Helping Families

I am a Paediatric Epilepsy Nurse Specialist, working for South Devon Healthcare Trust. My role is to provide support, training and information to the child, parents and carers. When families are given a diagnosis of epilepsy it can be devastating, as they have no idea how things are going to work out. One of the most common things parents tell me when I do a first visit is that the child is in with them in their bed. The reasons for this are that they are frightened that their child will have a seizure and they will not hear them. Having the facility to be able to offer them a bed alarm literally changes their lives. The look on a parent’s face when I tell them that they can have an alarm is one of pure relief. They tell me that they are able to sleep again, and therefore able to cope with things much better, the child gets their independence back and can start to deal with their epilepsy, and start to regain control. Since being in post I have contacted the Muir Maxwell Trust on several occasions for help, and every time they have been able to help my families. I am very grateful and on behalf of my families I would like to thank everyone for their generosity and urge everyone to continue to donate to this very worthwhile and needed charity."
Andrea Gibbs
Paediatric Epilepsy Nurse, Torquay

"The Muir Maxwell Trust has supported many of our children and families for several years. It is most beneficial that referrals may be made directly by paediatric nurse specialists for items such as seizure alarms, which help to reduce anxiety for families who have children with tonic-clonic seizures in sleep.  

The Trust has also supported children and families throughout Scotland by giving a generous grant to the Scottish Epilepsy Nurses Group. This allows us to buy leaflets/books and envelopes to put together general information packs which are given to families of recently diagnosed children with epilepsy.

By having access to a financial resource such as this Trust, nurse specialists have an opportunity to improve the lives of children and families who may not be able to afford such items as specialist toys/beds/equipment by writing a simple request for funding. That the funding requests are reviewed and decided on promptly by the Board regularly is of great benefit to the families who often wait months for decisions to be made from other sources."
Celia Brand
Paediatric Epilepsy Nurse, Edinburgh

"One of the biggest fears of parents whose child has epilepsy is that their child has a seizure during the night when they are sleeping and they cannot respond to this. Some children and teenagers only have seizures during sleep, and sometimes these seizures can be prolonged, requiring urgent treatment. Before the Muir Maxwell trust was available this was a huge problem as epilepsy alarms are expensive and many families did not have the financial resources to manage this.

The fact that the Muir Maxwell trust will fund alarms for children with convulsive seizures makes a big difference to:
- parents who can sleep more confidently
- to children who are frightened they will have a seizure during the night and their parents will not hear it
- to help teachers, parents and children be more confident about school trips
- and finally to epilepsy nurses and support workers who can offer practical solutions to difficult situations

We are very grateful to the Muir Maxwell Trust for their continuing contribution to children with epilepsy."
Margaret Wilson RGN, RSCN, IP, BA Hons
Paediatric Epilepsy Nurse Specialist
Fraser of Allander Neurosciences Unit
RHSC, Glasgow

"I recently requested funding for an alarm for one of my patients and would like to thank the Muir Maxwell Trust for helping with this vital piece of equipment."
Clinical Community Liaison Officer, Glasgow
Child aged 3 year

"We would like to thank the Muir Maxwell Trust for helping us to get the epilepsy monitor for our daughter. We feel she is much safer now and we can sleep a little more easily."
Mrs F, Dumfriesshire
Mother to child aged 18 years

"Thank you very much for supplying us with a monitor. It has been brilliant – I as a parent feel much better at night and I am able to sleep."
Mrs W, West Midlands
Mother to child aged 5 years

"Thank you so much for your generous grant which has bought a specialist bed for our son. It has made such a difference to our lives. I would like to thank the Muir Maxwell Trust from the bottom of my heart for caring enough to help us."
Mrs J, Stafford
Mother to child aged 3 years

"As my daughter’s seizures only occur at night, this equipment is invaluable. My husband and I are both hoping we will now sleep a little easier. We are extremely grateful."
Mr and Mrs M, Preston
Mother and father to child aged 3 years

"I wish to sincerely thank you for giving us the monitor. It has allowed us to put some normality back into our lives in that it has given us the confidence to allow our daughter to sleep in her own room again, which has given us the opportunity to get much needed rest."
Mrs B, County Durham
Mother to child aged 3 years

"I must report that in light of our daughter’s worsening condition, the epilepsy monitor has become the most important piece of equipment in our house. It has changed our lives for the better and I wish to express our gratitude for your extremely generous gift."
Mrs B, Edinburgh
Mother to child aged 7 years

"My son is 14 years old and has suffered from severe epilepsy since he was three and a half months old. We hope that the introduction of the alarm will enable us to give more independence to our son and more peace of mind for my husband and me."
Mrs Thompson, Northumberland