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Posted by Ann Maxwell on 14 Nov 2008
Welcome to the Muir Maxwell Trust Forum. I am hoping that parents and carers of children with difficult epilepsy will use this forum to share stories, experiences and even advice, relevant to the care of our children. Perhaps some moral support too! After all, our task is not an easy one. There is much to learn and much to share.
Many of you have already spoken to our Family Liason Manager, Ann-Marie Nelson and some of you have also spoken to me. We are keen to help in whatever we can.
The decision to set up a forum was driven by you, our beneficiaries. We have successfully introduced a number of you to each other but you have expressed a desire for something more. Caring for a child with difficult epilepsy can be a lonely existence for a family but some comfort can be found in contact with others living the same or a similar experience.
So far I have based the work of the Trust directly on my own experience of raising Muir but going forward, I am eager to hear from parents with different experiences from my own. Please don't be frightened to post that "silly" question, feel free to be controversial or even vent you frustration and anger, if appropriate.
The Muir Maxwell Trust will do whatever we can to help.
9 Comments
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Catherine Bell replied on 28 Nov 2008 at 12:33
Thank you so much for doing what you are doing - we are at the beginning of our very long journey with Jack (2 on friday) - and everything you are achieving is one less battle we will have. Reading your blog really makes me feel that the fundraising my friends and I are currently undertaking for MMT is really going to help make that difference.
Love to you and all your boys
x -
Catherine Bell replied on 28 Nov 2008 at 12:33
Thank you so much for doing what you are doing - we are at the beginning of our very long journey with Jack (2 on friday) - and everything you are achieving is one less battle we will have. Reading your blog really makes me feel that the fundraising my friends and I are currently undertaking for MMT is really going to help make that difference.
Love to you and all your boys -
ann Maxwell replied on 1 Dec 2008 at 13:02
Hi Catherine,
Thank you for your invaluable support. We are very excited about your fundraising ball planned for May next year and as you know already, we will give you all the help we can to ensure its success.
The Muir Maxwell trust began with a fundraising ball. We have had 7 now, including the latest one on Saturday 29th November which raised £400,000. In total these events have raised nearly £4.5 million. But we only do one a year (normally) and I know exactly how much work goes in to them to make them a success.
This is the first year that we have really experienced fundraising by our beneficiaries and it is just fantastic. Every liitle amount helps. Big amounts help too. Our total fundraising for this year is already around the £700,000 mark with still 4 months to go to our financial year end and a great chunk of that has come from people just like you.
We are eternally grateful to all of you who are supporting us.
Keep up the good work and do let us know if we can help in any way.
Heartfelt thanks.
Ann Maxwell
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Alex Pelling replied on 20 Jan 2009 at 13:36
What and amazing website and an amazing charity. Can't believe that I have only just stumbled across you! I have a 5 year old son, Patrick, with complex epilepsy and global developmental delay (!). First seizure at 8 hours old. No medication has yet been successful in controlling his seizures. In fact he is currently not on any regular meds and is a lot better for it.
It's the relevance of the charity to our situation that has really struck me. I will be a regular visitor to the site from now on.THANK YOU
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Ann Maxwell replied on 19 Feb 2009 at 14:00
Hi Alex,
Great to know you are watching!
Everything we do is driven by our personal experience of raising a child with severe epilepsy. Hopefully it will all remain relevant to you as we progress our work. Please tell others about us and direct them to our website if you can. We need as much support as we can get, particularly in terms of fundraising in the current economic climate, if we are to continue to develop our practical support for families.
There is much to be done. I have a good idea what needs to be done but it will take time and it will take money, inevitably. But I am determined!
Your feedback is invaluable.
Thank you!
Best wishes,
Ann
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Beckie replied on 8 May 2009 at 16:16
Hi
What a wonderful website and trust you have. Well done you
My 4 year old daughter has Angelman Syndrome and we have just started on the Epilepsy journey which goes hand in hand with Angelmans. We thought she had been lucky enough to be in the 20% not to have seizures but they started to show up - at first as febrile convuslions and then over time more and more. Eventually she was blue lighted in on March 2nd and then 4 days later she was admitted again with uncontrollable seizures.
She is now on 4 mls twice a day of Epilim and other than a breakthrough when she had D&V bug she is OK at the moment.
i feel that we have been given the meds and sent on our way with no support at all.
Thank you
Beckie xx -
ann maxwell replied on 15 May 2009 at 15:24
Hi Beckie,
Thank you for visiting our website and I do hope we can be of some support to you in the care and management of your daughter. There are lots of families out there living this more complicated life! You are not alone although at times I think we all feel we are on a lonely jouyrney.
We are working hard at MMT to progress our practical support for children with difficult epilepsy towards a cure. There was a time when I thought only a miracle could make that happen. Now I can almost see it!
We are about to announce a new project that we are thrilled to be involved with and we hope the outcome for many children will be "a cure."
Keep watching the website. Details are coming soon.
Best wishes,
Ann Maxwell
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Tobias Pfister replied on 7 Apr 2010 at 12:27
Dear Ann,
Thank you so much for your efforts and invaluable website. Above, you mentioned a 'miracle' in progress - is there an update on this one or can you tell more about it?
Best wishes,
Tobias
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Ann Maxwell replied on 14 May 2010 at 12:52
Dear Tobias,
Thank you for your enthusiatic support. I am happy to update you on progress towards our "miracle" but do bear in mind I said I could "almost" see it.
It will take a while yet but we are progressing towards it in the form of our partnership with Edinburgh University College of Medicine to establish the Muir Maxwell Childhood Epilepsy Research Centre. I have pledged to raise £1m to fund the initial world class research team, currently being recruited by Edinburgh University College of Medicine.
The team will focus on cutting edge research in paediatric epilepsy translating it into tangible benefits for children and families. A Chair of Paediatric Epilepsy will shortly be appointed and it is expected that real results will be achieved within a five year period enabling earlier intervention and prevention of some of these more complex and devastating childhood epilepsies.
We are also making fantastic progress with our UK DNA service run from Yorkhill Children's Hospital in Glasgow. Almost 1500 DNA samples have been tested and nearly 300 children identified with Dravet Syndrome. The service is ready to go to the next level testing for another 9 genetic epilepsies and I am currently trying to raise a further £250k to enable this to happen.
This is all considered translational research which means we are taking research from the bench to the bed inorder to benefit patients. None of this would have happened had we left it to the NHS but we are reassured by the fact that the NHS has absorbed the long term cost of these services once it was evident that they work and there is a need.
Sadly, children like Muir who is 13 years old and profoundly damaged by his epilepsy may get little benefit now from these achievements but at least we are giving the children of the future with epilepsy some hope and the prospect of a better quality of life.
Best wishes,
Ann