PCA PRESS RELEASE
"There’s a chance in the future we may be able to talk to Jessica, you just cannot buy that."
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Former Glamorgan and Sussex all-rounder Keith Newell and his wife Victoria have written the following blog to explain how their daughter lives with Mitochondrial Disease and how the Professional Cricketers’ Trust are supporting the whole family.
Keith: We will never forget that time where we were at the hospital and got called into a side room to be told our beautiful daughter had been diagnosed with a life-limiting condition.
It doesn’t get much worse to be honest but we had to stick together and work out how we could create memories with Jessica to give her the best possible life. We now feel the time is right to shine a light on the Professional Cricketers’ Trust and the work they continue to do to support past and present cricketers.
Keith: It still amazes me how the PCA and the Professional Cricketers’ Trust treats every single past and present cricketer equally. There are a lot of current professional cricketers and they could just say ‘you are not a professional anymore so we do not have to worry about you’ but the great thing about the Trust is they don’t forget.
You are one big family and just because you haven’t played for 16 years you are not forgotten. They continue to help you and there is a huge range of things that they can do for you individuals and families.
We have found that out first hand when our daughter, Jessica, was diagnosed with Mitochondrial Disease in 2014 and her particular form of it is called Leigh Syndrome.
We noticed Jessica had started to miss milestones and we did become concerned. After many scans and tests the consultant called us into the side room, you know it is going to be serious then.
We had a couple of doctors and consultants with us and that’s when they told us the news about the disease. In my naivety I remember saying well how is this going to affect her when she is 35, 30 or even 20-years-old? Then it was like a sledgehammer to the face when they said ‘I don’t think that you realise that this is a life-limiting condition’ and then they said her life expectancy was toddler years, I broke down then.
Victoria: Jessica is very much a Daddy’s girl, her face lights up when Keith comes into the room and gives her cuddles and wrestles with her, it’s beautiful. Jessica is an amazing little girl, she is so brave and is so strong and she really goes through the mill with her epilepsy and all of her different symptoms of her condition.
Her brain is not developed in the right way so parts of her brain are dying and as a result of that, it inhibits certain aspects of her abilities. It’s quite overwhelming because you find yourself with a cold or you have hurt your back and you think ‘oh I don’t know if I can get through the day’ and then you realise Jessica has had 15 seizures and she still smiles when Keith comes in from work.
Keith: When she was diagnosed you feel alone, you become very insular and then it’s a case of what do you do now and who can help us? The Professional Cricketers’ Trust have been brilliant; they have helped us out with certain items, they have helped us financially to get away on a holiday with Jessica and just the general support that doesn’t cost a penny.
They are always contacting us asking how they can help us, how Jessica is doing and is there any other ways they can offer support.
Since we filmed the video earlier this year we have received delivery of a new disability buggy thanks to the Trust and this has made a big difference in the way we can travel places with Jessica.
Our ability to financially look after Jessica and the extra costs associated with looking after a child with a life-limiting condition makes it difficult and the Trust have been fantastic.
Victoria: We have been supported with some funding for a rental of a piece of equipment called an Eye Gaze which is like a laptop screen with a camera on the top which recognises where Jessica looks at the screen. It’s similar to the piece of kit which Stephen Hawking had and the Professional Cricketers’ Trust provided half of that funding which was brilliant.
It is actually life-changing. Jessica being able to have an Eye Gaze system is life-changing for her and for us. We can’t really communicate with Jessica very well but there’s a chance in the future we may be able to talk to her, you just cannot buy that.
Keith: The Professional Cricketers’ Trust is invaluable and everybody behind the scenes who works so hard and all of the donors, it’s what makes everything work. Without all of the fundraising which goes on all year round things cannot happen.
We can’t thank everyone who contributes to the Trust enough.
After our experience, I would really encourage past or present who are going through a difficult time to contact the Trust no matter what the issue is. Drop Ian an email firstname.lastname@example.org or call him on 07920 575578.
For more information on the Professional Cricketers Trust, click here.