Give Jessica Freedom with a Specialist Power Wheelchair

Hi I’m Janice, Jessica’s Mum,

The quick read..

Why Jessica needs a specialist power wheelchair...

• Freedom - Let’s give Jessica independence she craves out and about

• Adventure - Get Jessica onto the beach, into the woods and off-road

• Joy - Help her pursue her hobby of nature photography

• Comfort - Jessica has long outgrown her 10 year old power wheelchair

• YOU can make a difference today by donating and sharing amongst all your social groups on and off-line

• THANK YOU for reading, donating, sharing

Can you give up a coffee or two for Jessica? £5 or £10- How about staying off the caffeine for a whole week at £25-

The longer read...

Just like most mums I had hopes and dreams for my daughter, but sadly, I didn’t think for one minute that my daughter’s beautiful dreams and ambitions would be cut short almost overnight.

One week our creative, energetic, capable, sociable, clever fourteen-year-old daughter was living her best life and the next, she was struck down by something that is invisible to the eye, but I can assure you that Jessica felt every single ounce of this condition called Mylagic Encaphalomyletis, which is better known as ME.

Jessica has had this debilitating condition for over ten years, she is now 24 years old. I'd been married for about a year by the time I was 24.

Imagine a life where you are so limited that you can’t see friends, and those friends you had drift away as you can no longer socialise or attend school. Imagine a life where you can’t take trips to the beach, the countryside, the local woods, or beauty spots. You never feel the wind and fresh air on your face, you can’t hear the wind rustling gently through the trees or even go for local walks - you simply can’t be at one with nature. Most of the everyday things that many of us take for granted are just not possible for Jessica. Remember the lockdowns starting in 2020? – this is our life almost everyday!

As her mother, it is so hard enough to witness Jessica’s depleted energy levels and total lack of strength. There is so much that she needs help with, even her cutlery has to be lightweight, as she struggles lifting regular steel cutlery. Jessica has had her current power wheelchair for 10 years, from teen to adult. She uses this for all her mobility and it has been her lifeline. However, her height, size and weight have all changed during this time and it is now uncomfortable and too small. This is limiting the majority of activities that we would like to do as a family. It also significantly limits Jessica’s life experiences.

How wonderful it would be for all our family, to take Jessica out, onto a beach, have a picnic, go into the woods, take her along uneven pathways safely, so that we can spend quality time together. How wonderful it would be for Jessica to feel the sea breeze, to see and hear nature, an experience that is a proven essential for the soul.

Take a moment to imagine what it’s like to have no control over what you can do while you are out. To having to ask the person pushing your chair to stop, go this way, go that way, or back up a little so that you can spend a little more time to gaze at something in more detail. Shopping centres are often noisy and busy places and it’s difficult for Jessica to be heard so she might miss a moment altogether. Jessica describes this as ‘feeling like a toddler, tied to my side.’ The new specialist chair would allow her to stop and start, move at her own pace, change direction when she wants and allow her to make her own choices. This is so important, especially when so many options have been taken away from her by this cruel condition.

We have done a lot of research and taken professional advice on the best power wheelchair for Jessica - the Mybility DL. She has trialled this and it suits her needs perfectly for now and, the future. This is not available via the NHS, and the NHS manual wheelchair simply does not meet her needs as it would not allow her any independent movement at all - she would be 100% reliant on someone else at all times. as Jessica is an ambulatory wheelchair user, she was only provided with the most basic push attendant wheelchair.

The new chair would give Jessica the much-needed freedom to enjoy her passion of wildlife photography. It would also give her access to most beaches, to be able to share adventures with her friends, without her family in tow to check that she doesn’t get stuck, and of course, it allows for more family days out. One destination at the top of Jessica’s list is a trip to Bath, which is not possible now, due to the cobbles and hills.

The Mybility DL is amazing; it has the ability for Jessica to lean back, is four-wheel drive and offers full control. It would mean Jessica could go up any incline on any type of surface in a safe and confident manner”. A world away from her current chair which often slips and feels unsafe. In fact, on more than one occasion, control has been lost and Jessica has nearly ended up in a ditch! All this compounding the feeling of vulnerability, frustration for Jessica and the lack of any sort of freedom.

The confidence, independence, variety of life, family experiences and flexibility that the new wheelchair would give is immense.

Jessica is a very kind and caring young lady, she is conscious of what we are all taking out of the world and tries hard not to contribute to waste, she has a beautiful conscience, she questions her needs, should she make do, which means, not going out, should she accept her lot, that is really hard to hear as her parent.

If you were to ask Jessica how she feels, she says that she ‘feels so guilty, that she is a burden to her family,’ life is hard for her, it’s exhausting. She wanted to be a mermaid when she was younger, she loved art so much and she absolutely loved reading. She is hugely sensitive to the fact that fundraising is the only way to get this chair. We don’t want her to feel guilty and we believe that when people start to donate, this will change her feeling unworthy of this cause.

When we see other fundraising activities, we don’t question them, so we reassure her, that this is more than OK, in fact, to us it’s essential for her health and well-being.

A friend said to me that she couldn’t believe how limiting this illness can be, and in truth no one knows unless they experience it for themselves. As a family, we feel strongly that if we can make any aspect of Jessica’s life more enjoyable and bearable, that it would be absolutely amazing.

The Mybility DL meets all her needs, but it comes at a cost. Therefore, any donations big and small would be gratefully received. Of course, spreading the word is hugely important and vital to the fundraising being successful and so please would you be so kind and share this page/link on your socials as often as possible.

Please also, follow the campaign as we would love you to be a part of this journey so that you can see how we are getting on and what a difference you can make.

We really can’t thank you enough for donating, sharing and ultimately helping to make an immense difference to a young and lovely life.