A A A Accessibility A A A A

Molly Watt Trust

Towards the end of last year I started communicating with Dan via Twitter.  Dan was working with Radio 4's In Touch and was keen to get me on radio to talk about Usher Syndrome.

As Christmas got nearer we decided to look at doing something in the new year. 

One of the programme producers was in touch by email and we discussed my needs and what I would speak about.

The date was set for Tuesday 20 January 2015.

The Radio 4 Studios are in central London, somewhere quite unfamiliar to me, it's busy and worse it was going to get dark!  Fortunately my best friend Kyra knows me well and is brilliant at stepping in to help when I need her.

For me planning ahead is very important, however there are some things I cannot plan and that does make me anxious.  I was concerned I would struggle to hear well enough to come across well.

Would the studio be dark, would there be bright lights shining at me, would the studio echo, would Peter White be too far from me for me to at least lipread a little, would I mishear - everyday concerns but when appearing live I was worried!

This is Usher Syndrome and I'm used to it but when I'm given the chance to raise awareness with a huge audience I want to get it right.

I should mention I did not have my new Resound Linx2 smart hearing aids back then.  They have certainly made a huge difference to my ability to access sound in the more difficult and challenging situations as described above.

Thankfully I was very well looked after by the staff at Radio 4, I got to meet the inspirational Peter White and Dan, who deserves a huge thank you - THANK YOU DAN.

This blog isn't really about me but about "Accessible Social Media" and how powerful and in this case, positive and for me, quite magical.

Without it I would not have appeared on Radio 4 without it I would not have found Dan and without my radio interview about Usher Syndrome and its many daily challenges I would not have reached an audience of millions including the man that is Andy Gill.

Andy not only found Molly Watt Trust on Twitter but has kept in touch and supported the charity since then promising to run The Great Northern Run for us and even though he is a very busy man, he is doing it exactly that.

I have to admit when I read his bio (below) I felt very humbled and a deep pride that this wonderful man, a complete stranger not only listened and took on board what I had said but has been inspired enough to want to help raise awareness and fundraise for the Usher Community - thank you Andy, I hope to be able to come meet you and cheer you on in September.

Andy Gill's Full Bio

On Tuesday 20th January I was driving to Swindon from Alnwick in Northumberland and if I’m not listening to some music I would stick Radio 4 on. Not that I’m an oldie or boring but they do actually have some good material on there that can take you through 200 miles without you realising.

Now on this particular evening I listened to an article on “Usher Syndrome”….. Obviously at first glance you’re thinking the same as me, it’s for those people who don’t like Usher’s music but that wasn’t the case. I am not going to go into detail as it would be worthwhile visiting http://molly-watt-trust.org/ to gain a more thorough understanding for yourself.

I was touched by the content, by the delivery, the honesty, openness, and felt that I had just been educated on the issues people with “Usher Syndrome” can encounter. Bullying, coping with people’s naivety to what other normal looking people can suffer from, lack of support from multiple education factions, and more.

Molly Watt took me on a journey that evening that truly pulled at my heart strings.

I for one didn’t appreciate that this is a progressive condition, however, it doesn’t take a genius to realise that without the correct support network of family, friends, organisations and people like me who stumble across the Radio 4 programme that evening, that people living with Usher Syndrome are living a tough and challenging life.

If I can do anything that makes the slightest bit of difference to Molly, along with other people who have this condition, then I will certainly try my hardest.

On the 13th September 2015, I will be running the Great North Run. Now on my previous 2 attempts I was thwarted in my efforts to break the 2hour barrier by changing my running pattern accommodate 1) a friend who wanted me to wait while he had a pee that appeared to take 20 mins…. 2) to run with my lovely cousin who I must say did absolutely great and I thoroughly enjoyed it even though I shortened my stride and I probably ran the equivalent in steps of 20 miles. Anyway, 2 great runs and both of them were for Children With Cancer or CWC @CWC (Twitter).

Last year I had a ballot place which I deferred to this year as I had work commitments that meant I couldn’t make it. So, rather than run for a recognised national/global charity I asked Molly if it would be possible to represent The Molly Watt Trust and I was delighted to say Molly kindly accepted and has designed and made up a cracking running top which I will wear with pride. I probably won’t achieve sub 2 hours but a lack of true training, new born baby, lack of sleep, I love my food too have all contributed to me remaining “HEAVY”….. I will however enjoy the day knowing that this little run, yes 13 miles, may have generated some additional funding for The Molly Watt Trust and in turn people who have Usher Syndrome may benefit in some way.

Now, if you’re reading this you may want to support me and make a donation or even set me a challenge by stating you will give more if I achieve say sub 2hr 20min for example. Be realistic!

Whatever happens on that day, however much I can help raise towards MWT I will continue to look for ways to support Molly and her trust.

What I will also say is you don’t have to have met Molly to support her. I haven’t but I feel there is a need to raise awareness of Usher Syndrome and the issues these normal looking folk encounter on a daily basis that we all take for granted.

PLEASE GIVE GENEROUSLY 

Thank you Andy

https://mydonate.bt.com/events/mwtgreatnorthernrun/242692

 

Sunday, 09 November 2014 00:00

Dad's First Blog

Well it's high time I tried to put down how I feel about Molly Jane Watt.
I wear the badge with pride which says I've unconditional love for all of our children. Harry was born 26 years ago. Life changed very much once we became parents. Start of unconditional love. Jack born 22 years ago; then the delight of our first girl (Molly). She used to blow raspberries and we didn't realise for sometime that this was because she couldn't hear us so the vibration of these noises were her trying to communicate. She was diagnosed as severely deaf at 18 months.
Jane was devastated and typical of me it "was fine we will deal with it." I actually feel quite guilty that I didn't take this condition anywhere near as seriously as Jane.
I've always tried to find the positive wherever I can. Looking back I feel bad that I didn't support Jane as much as I should have. Of course the past has happened so we can't change it.
That devastating blow to our beautiful little girl changed the whole dynamic of ours lives as we became involved in South East Berks Deaf Children Society. We shook our cans outside shops for any pennies we could get. Early lesson in life. The ones who looked like they'd pop a few pennies in to our cans would cross the street whereas a scruffy looking person would put a fiver in. Very interesting. Fundraising became something we really got into.
Lily came along to complete our wonderful family, 2 boys and 2 girls, perfect.
At age 12 Molly who had mastered a totally normal life with lots of friends and great social skills had an eye test and then we were hit by a proverbial sledgehammer. She was going blind. Hard to put this down in words. Imagine losing your sight and already deaf!
Sight has to be the most precious sense we have. Molly's was going and fast.
It took a little while to tell her.
When Jane told her she didn't make a big deal of it, It was as if she knew and had started to prepare for her new life in the dark!
Since the age of 12 Molly has had to endure visits to Moorfields Eye Hospital to start with every 3 months then twice a year her consultant was Prof Tony Moore along with his team, a wonderful man.
Our fundraising events were galvanised once Molly got diagnosed with Usher Syndrome. I did various challenges and have been supported by some lovely people. We calculated a year or so ago that since Molly was diagnosed deaf we've raised over £50,000 to help support people like Molly. It's a very powerful thing the gift of giving and this gives Jane and I so much pleasure. Making a difference to people with Deafblind issues is what we are all about.
Molly is one amazing young lady. I'm obviously biased but I have to say that with dozens of events we've either organised or been along to where she has spoken it's very humbling to hear and see the feedback.
I'm proud of all of our children and never favour one over the other. With Molly's issues which to this day are very challenging it has meant Jane has had to spend more time and effort with her so to speak.
Molly's best friend Unis her Guide Dog came into her life over 3 years ago and is literally her eyes and often her ears aswell. They are one great team. Molly is on an amazing journey and I've no doubt she will be famous not for any selfish reasons but simply to help others. In her young life (20 now) she's done a lot of living and I'm sure there's plenty more to come. That's it for now as I'll be doing more blogs in the coming weeks, months and years to come as Molly's amazing adventure continues......
 
Monday, 03 November 2014 00:00

Glendalough Trail - 1 November 2014

Well, here I am with some amazing friends and family( I'm the short one with red hair!!) getting ready to take part in my very first charity event here in Ireland to raise funds for the Fighting Blindness.ie.

It was an amazing but extremely tough challenge in the Glendalough Valley in the mountains in Co. Wicklow, especially as it was my first time partaking in such an event. Admittedly, I'm so delighted with myself for completing it and not even the sore legs can take the smile off my face. It was also a very important event for me personally, as while fundraising I decided it was time to reveal to everyone that I am losing my eyesight and that it is due to Usher Syndrome type 2. Only some of my close friends and close family knew beforehand, and even though they had given me enormous support and still continue to do so, it was time to make others aware. I wasn't diagnosed with Retintis Pigmentosa until March 2013, a few weeks before my 34th birthday. It was with complete and utter shock to learn of this diagnosis and I don't think i could ever forget that day, how could anyone really? After diagnosing me with RP, it suggested that it could be due to Usher Syndrome and I was urged to find out more about this condition. I left the ophthalmologist's office having heard his words but not comprehending what he actually meant. It was only when I got home and like everyone does, I 'Googled' it all. That's when it hit me, I'm going blind. When he spoke of my eyesight getting worse and worse but hopefully I might have good central vision for another 10/15 years, that's what he meant, I'm going blind. He talked of the possibility of gene therapy which looks promising but probably not for another 15/20 years, he meant I'm going blind and there's no cure at all. It was really difficult to believe that I was having to deal with going blind when I was already deaf. Kept thinking was this 'supposed god' having a laugh? Reading up on Usher Syndrome, I knew straightaway that it was what I had and more than likely it was type 2. It really was like reading about myself. Genetic testing later showed that I do indeed have Usher syndrome type 2 (USH2a). It was awful though, having to tell my parents that the hearing loss was in fact genetic (previously thought it was due to an infection) and that I am also going blind now. I know they did blame themselves for awhile but I'm hoping that with me being open and honest with others about it, it will show them I will be just fine. I came across Molly Watt during my first Google search on Usher Syndrome and kept thinking wow, fair play to her for all that she was achieving and not letting it hold her back. I really admired this girl and I still do!! I also came across Mark Dunning and the Usher Coalition, Megan Kennedy and many others, and the positivity and faith they had but yet being totally honest with how hard it can be was admirable. They all gave me the strength to believe that I can still achieve things in life despite it getting harder to do so. After a year and half of coming to terms with the diagnosis, I realised I didn't want to hide it anymore. I did hide my hearing impairment and I had left it to others to guess that I was so. But hiding going blind... no, that would be so draining and completely unnecessary. So I put up on Facebook the link to my fundraising page where I explained briefly what I had and how it was affecting me. It really worked out well as I had a lots of people talking about it and it really raised the profile of Usher Syndrome in my area which I'm delighted with.. Also by raising awareness of the condition I was hoping to get support and understanding in return, and that is happening. The amount of support I got was overwhelming! There is still some way to go though with raising awareness and making others understand how tough it is. But sure it's only the start of my journey with Usher and I intend to make it a posiitve one even if it does get a bit bumpy along the way.

 


  

Donate

 

To support the work of MWT please click on any of the Donate buttons below or alternately you may send a cheque made payable to Molly Watt Trust and sent to Queen Anne House, 25-27 Broadway, Maidenhead,Berkshire, SL6 1LY.

All donations and support are gratefully received.

Please complete this form if applicable so that we may claim an additional 25% in gift aid.

 

 

Donations for the Molly Watt Trust help those with Usher Syndrome

Molly Watt Trust - Helpling those with Usher Syndrome

Paypal Donations to the Molly Watt Trust

 


 

 

Recent Blogs

Usher Syndrome Children's Event - Se…

Since my young daughter was diagnosed with Usher syndrome 5 years ago I had never met another child or family living with Usher syndrome here in the UK. I'd been lucky enough...

Read more...

Is the NHS listening? Usher Syndrom…

We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since...

Read more...

The love of Unis

Unis came into my life when I was 16 years old.  Looking back I know I did not thoroughly embrace her, I also acknowledge the constant bullying and questioning of...

Read more...

A Visit to ATOS London Offices

I recently visited the ATOS London Offices, for an appointment set up by my Mum, Jane. We were there to meet with Dr McKillop to discuss varying issues and negative experiences...

Read more...

Mario's day to day life with Usher S…

My day to day life with Usher Syndrome (Retinitis Pigmentosa) is a constant fluctuation between moments where I can ‘get by’ and moments in which my disability presents real challenges...

Read more...

Disjointed Care or Digital Data?

I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and the various services. It certainly got...

Read more...

Bali - Sound Sensations

At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali...

Read more...

Usher Syndrome / Christmas Challenge…

Hello, my name is Josh Parker and I have Usher Syndrome type 3. Most of you reading this probably already have an idea what Usher Syndrome is, so I’ll keep...

Read more...

A toolkit to enable deafblind to acc…

San Francisco in November was an amazing experience, not just because I got to speak in Silicon Valley to some of the very top people in digital at Qcon I...

Read more...

Singapore Airlines - Never again

I blogged about my not just poor but disgraceful treatment by Singapore Airline cabin staff on 13 November during my flight, Heathrow to Singapore.  I very unpleasant start to travel...

Read more...

Singapore Airlines a Very Unpleasant…

13th November, the start of my adventure to the other side of the world.  It had been just two days since Mum and I had come off a plane from San...

Read more...

Deafness makes you more blind

My name is Colin Hetherington and I suffer with Usher Syndrome which is retinitis pigmentosa (blindness) which gives me all sorts of daily troubles from glare tonight blindness, headaches flashing...

Read more...

Facebook - Anti Social Media!

Dear Facebook I am a 22 year old who struggles with accessibility. I am registered deafblind, however, I was not born deafblind but deaf.  What that means, to you, is that I...

Read more...

iOS10 Accessibility

Dynamic text galore! As we all know Apple products, get fairly regular software updates.  I had read and heard a few things about iOS 10, but was intending on waiting to experience...

Read more...

My Trip to Parliament

My partner Lyn decided that we should head for the big smoke to celebrate my 50th Birthday.  We are both have guide dog owners and both love London. I used to...

Read more...

University: To Listen, to Learn, to …

I have been asked over and over why I didn't complete my initial dream to be a primary school teacher and for some time it was a sore subject, however...

Read more...

I was hopeful but disappointed

My hopeful journey into the Wireless Bluetooth hearing aid world.   With Danalogic ifit cs71w hearing aids, Resound phone clip+ and a mini mic. I started off by asking my local NHS ...

Read more...

Being an Usher Mum

Being an Ushers Mum.  In 2011 I went for routine eye appointment and after a small discussion, the optician wanted to refer me for some tests.  I immediately had an in house...

Read more...

BA listened please listen more

After my recent report regarding very unacceptable treatment whilst flying British Airways Premium Economy to Las Vegas in May I’m very pleased to announce that they have at least changed...

Read more...

Centre Stage Applewatch

AppleWatch and smart technology are brilliant for people with Usher Syndrome!  I have Usher Syndrome, which means I was born deaf and in the last ten years I have lost most...

Read more...

Unacceptable Audiology

I have Usher Syndrome, I am deafblind and my condition is degenerative. The fact that it gets worse and my abilities change all the time means that I have to make...

Read more...

Life is a Rollercoaster

As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years. A husband and four children comes with challenges but nothing out of the ordinary accept...

Read more...

Molly Addressing Accessibility with …

My outward journey to Las Vegas was nowhere near the way it should have been. The necessary call to ‘special assistance’ had been made by my mum prior to the trip...

Read more...

Usher to Usher

I hope you don't mind but after researching usher's syndrome and RP I came across your blog and I wanted to introduce myself. My name is Bethanie (or Beth), I'm...

Read more...

Applewatch for Award Winning Paracli…

Hi I am John Churcher and I have Usher syndrome type 2. I have always had a hearing loss and was diagnosed with retinitis pigmentosa at the age of 14...

Read more...

Safe and Secure with Accessible Ring…

About a month ago The Ring Video Doorbell was brought to my attention and I was asked if I'd like to try it. I love technology, particularly assistive and enabling technology. What...

Read more...

Global Accessibility Awareness Day 2…

Usher Syndrome for me means my whole world is accessed via accessible assistive technology. A year ago to the day I was fitted with Resound Linx2 hearing aids.  It has been...

Read more...

Learning from each other - 'In it To…

Walsall 2016 'Hear no. See no, Techno' Jo Milne, Colin Hetherington and Me. Once again we were blessed with a room full of people all on similar journeys.  With Usher Syndrome or RP...

Read more...

Ready to meet others with Usher Synd…

I decided I would like to meet some fellow ushers as never met anyone and my sight has been steadily getting worse . I had support worker for blind visit...

Read more...

Why Access to Social Media Matters

I have been asked many times what my favourite social media is and why and my answer is always Twitter. The reasons I like Twitter are firstly from an accessibility view...

Read more...

What is in a logo

We are often complimented on our logo. Molly designed the logo for our charity. Below she describes how and why she designed it. The first thing you will notice is the Molly Watt...

Read more...

Applewatch - Thank you Molly

My son read Molly's applewatch blog to me last year.  She made everything sound so easy and to be honest I didn't believe it. My son kept on and and and...

Read more...

San Francisco Adventure

San Francisco had been on my long list of places to visit and I was lucky enough to go on a girls only adventure with Mum and my younger sister...

Read more...

Effortless Applewatch One Month In

So I've now had my Watch a month and the best way I can describe it is 'Effortless.' When I first got it all in its beautiful packaging it felt like...

Read more...

When a Picture is more than a Pictur…

Taking a photo to me is not just a picture, its capturing a moment, capturing sight I no longer have.   I take a picture and then take it apart to...

Read more...

Applewatch Awesome but Hearing Aids …

I recently received an applewatch from The Molly Watt Trust, via their GlobalGiving project. I love gadgets. I have ushers syndrome type 3 which is gradually robbing me of both my...

Read more...

Applewatch Accessibility and Connect…

To quickly introduce myself, am Colin and I have Usher Syndrome type 3, the rarest of the Usher types.   I recently received a letter to collect a package from the...

Read more...

A Simple Tap or Touch can Mean so Mu…

Something I am often asked at my presentations is what is the best and most acceptable way to approach or get the attention of a deafblind person. My answer would be...

Read more...

Linx2, Earbuds, Earpods - Definitely…

I recently read a piece virtually comparing hearing aids with earBuds / EarPods and hearing aids with glasses! I read the piece several times and still thought it strange.  I'm 21...

Read more...

Me, Myself & My Guide Dog x 3 - …

Recently I was invited to appear at the Sense Awards at Kings Cross London.  I had been nominated by friends and colleagues from the Usher Syndrome and RP Community, I have...

Read more...

Josh Dealing with Usher Syndrome Typ…

Josh’ Blog for The Molly Watt Trust Hi, I’m Josh. I’m 22 years old and I have Usher Syndrome type 3. I was born with normal hearing and vision, unlike most...

Read more...

The Jekyll & Hyde of Usher Syndr…

I had never heard of Usher Syndrome until I worked with a girl who has it.   If I’m honest I saw her come in and out with her guide dog...

Read more...

Can Deafblind Access Wayfindr?

An audible App or program for the blind, accessible to deafblind, using hearing aids? There was a time when accessing such a thing would have been impossible and in my lifetime...

Read more...

"Access to Tweet, Tweet to Acce…

I was delighted to see that at last Facebook allows dynamic text for those of us who use iOS and rely on it. Finally those who had been isolated from family...

Read more...

A "Resounding" Success

When I wrote my Applewatch blog back in April this year, I had no idea of the interest it would generate, nor the amazing people or companies it would lead...

Read more...

Please, Please, Please Consider All …

I was prompted to write a blog on reading this quote:  “For people without disabilities,technology makes life easier.  For people with disabilities technology makes things possible” (IBM training manual 1991). That quote...

Read more...

Edinburgh Social Event 3 October 201…

Best Western Kings Manor Hotel, Edinburgh Saturday 3 October 2015 was a great success. It was brilliant to see old and new faces and a time to share some news and...

Read more...

Usher Syndrome - The Importance of A…

I have now realised after many years that always trying to fight Usher Syndrome certainly does not work. I don't know if it's a pride thing or that I am just...

Read more...

Usher Syndrome Awareness

Usher Awareness Day Sept 19th 2015 Dominique Sturz, Usher Forum Austria My name is Dominique and I am the mother of a 19 year old daughter with Usher Syndrome, she is a...

Read more...

Trials and Tribulations of an Usher …

As some of you may know, Jake our sixteen year old son was diagnosed with Ushers Type 2a 3 years ago, at the time Trev and I thought our world...

Read more...

I can no longer hear with my eyes - …

I was recently talking about cochlear implant and was told the reason those of ANY age with Usher Syndrome (deafblind) that are profoundly deaf and wanting cochlear implant and who...

Read more...

We Own The Equinox 19 September 2015

Our sincere thanks go to Mark Dunning and his team at the Usher Coalition for their hard work in putting Usher Syndrome on the calendar thus resulting in so many...

Read more...

Hear No, See No, Techno!

I recently read about somebody I know who has Usher Syndrome and had got into a very scary situation. Having Usher Syndrome this sort of thing is very easily done. An accident...

Read more...

"5 degrees and Me"

Another major hurdle, I've reached 21 years old and I still have "5 degrees" of vision still remaining. I know it doesn't sound great and possibly terrifying to many but...

Read more...

The Amazing Positive Power of "…

Towards the end of last year I started communicating with Dan via Twitter.  Dan was working with Radio 4's In Touch and was keen to get me on radio to...

Read more...

Communicate Don't Assume

Up until 12 I believed I could do most things, why not, I was deaf but with hearing aids could hear.  It did make communication an issue sometimes, group settings, noisy...

Read more...

A Mum's Numb Despair to Pride in Sho…

How does a mum feel when she's told her 12 year old daughter is set to go blind - NUMB. First things first, get head around the condition, hate it with...

Read more...

Pushing My Boundaries

Pushing Boundaries This might not be seen as pushing boundaries for some....... However,  for myself it was like jumping out of an aeroplane! I have always admired a local photographers work and I...

Read more...

Access Illegally Denied - Guide Dog …

I was matched with Unis when I was 16 and over the past 4 years have been subjected to terrible discrimination simply because people either do not follow the law...

Read more...

C'est la Vie

On February 24th 2004 aged 22, my life changed dramatically in one day.  I went from being fully independent living life,  being care free, I had a vague  plan as...

Read more...

 


 

 

Bradley Timepiece - Usher friendly timepiece - Molly Watt Trust

©2017 molly watt trust, registered UK charity 1154853