I want to update all of you followers of Emma’s blog. Physically she has left us but she lives on in our hearts and minds in many different ways. This blog lives on, for example, as a testament to her spirit. Recently I was informed of something regarding Emma’s writing that, I think, might be very relevant to all of you who have accessed shapeshiftingemma and have scrolled down through these pages. It turns out that the features editor of the Evening Echo (a very popular local paper for those who don’t know it) was intending to ask her to write a regular column. To me this is a great accolade to her work. She began her blog in torturous conditions piecing together the letters of every word with the movement of her eyes. All she had was a hunger to write. Little by little her writing gained recognition. This developed to the point where she had many thousands of followers, where newspapers featured her work in their pages and where a 5 part radio program was produced based on the words of her blog. Thus to arrive at a place where an editor wanted her to write a regular column in his newspaper was an incredible achievement. Were she to have known this she could have been so proud of what she had done. For this reason I am letting you, the readers, know about it. You have valued her writing and appreciated her words and would know what this recognition would mean to her. Let’s all savour its significance in Emma’s (ongoing!) tale.
Kind regards to you…
By the way here is a link to the radio program that was made by Jo Pickup:
And here is a link to an article in the Evening Echo promoting that program:
I am so sorry to have to let you all know that lovely, amazing, beautiful Emma lost her battle with MND last Friday morning, the 27th of February. We are all grieving her loss here and can’t believe that she has left us.
Her funeral arrangements are on RIP.ie
Sincere thanks to all who have followed her blog. I know that it has been an inspiration to so many.
IMNDA came up with great idea of doing a sponsored silence in the month of February. Anyone who is interested can do it.
Imagine not being able to say ‘I Love You’ this Valentine’s Day
February is the month of love where couples from across the world openly celebrate their affection for each other. But imagine not being able to say ‘I Love You’ this Valentine’s Day. Most people with Motor Neurone Disease (MND) can’t. Between 80-95% of people living with MND will experience some loss of speech before they die.
Emma Fitzpatrick is 47 years old from Kinsale, Co Cork. She was diagnosed with MND in 2010. Since her diagnosis, Emma can no longer walk and is confined to a wheelchair. She can no longer speak and communicates mainly with theuse of Eyegaze technology.
“This most cruel disease has taken with it the use of my upper and lower limbs. It has also taken my voice,” Emma Fitzpatrick. Emma met her husband Jonnie on the eve of Valentine’s Day 16 years ago. This year she will not be able to say the words ‘I love you’ to him or her two children, Kitty and Rowan.
This February we’re asking you to take on a sponsored silence to experience what it would be like to not be able to speak. Stay silent for 30 minutes at work, school or even at home alone. During this time of reflection think ‘if today were the last day you could use your voice, what would you say?’Share your last words with us on Facebook and twitter (@IMNDA) by using #Voice4MND.
All you have to do is pick a day, time and location where you will take on your sponsored silence. Sponsor cards are available from our office, just email email@example.com or you can text MND to 50300 to donate €2 (100% of text goes to IMNDA across most network providers. Some providers apply VAT which means a minimum of €1.63 will go to IMNDA. Service Provider: LIKECHARITY. Helpline 076 6805278), then tell us what would be the last thing you would say if you knew you would lose your voice #Voice4MND.
Nominate friends and families to join you. Sometimes silence can speak volumes. Take on our challenge today. Don’t let Emma suffer in silence; don’t let her live without a voice.
The IMNDA provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by MND Nurse. In order to provide these vital services the IMNDA depends heavily on the generosity of the public and supporters of the association who generate over 86% of its income.
For more information please contact Derbhla Wynne or Maeve Leahy
(01) 873 0422 email firstname.lastname@example.org
Notes to Editor:
Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting. MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.
The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with Motor Neurone Disease, their carers, families and friends. There are currently over 320 people living with MND in Ireland. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed.
The days of January are passing by so quickly. I must admit I’m pleased the constant demands of Christmas are over replaced by fresh energy of this new year.
Lovely to get invites to friends, we spent the evening of 23rd being seranaded by musicians under twinkling lights.
Once I got over the fact that I couldn’t indulge in sparkling wine and crispy treats I was fine.
I was contacted recently by somebody Natasja [one of my carers] knows through her daughter ‘s school. This woman called Jo wants to make a radio program on my blog. An actress with a similar accent will read out extracts from it and interspersed with interviews of family and friends. I’m really excited about being part of this production. The kids are too and are due to be interviewed by Jo over the coming days.
I feel strong and positive for this new year.