For Abbi, With Love. Help Create Beautiful Memories

Hi. This is Abbis's story. We want to tell you all about Abbi, a little bit about what we're doing and why we are doing it.

Abbi is a beautiful soul living with an unknown degenerative condition. Though her journey is far from easy, her smile and spirit shine bright. If you've ever met Abbi, you'll know her smile- bright, warm and unforgettable.

Abbi wasn't born with an illness. She was happy and healthy, up until the age of 11. Before then, she was active and loved dancing and gymnastics. She was extremely bright and gifted. Abbi's symptoms started slowly with slurring of her speech, and her movement was affected. She began having tests and investigations back in 2004, and they have continued ever since. Abbi does not have a diagnosis. Throughout the years, she's had every test you could possibly imagine. From CT scans, MRIs, and lumbar punctures, to skin grafts (her skin samples have been sent to labs in other countries) and whole genome sequencing (specialised DNA testing.) Specialists continue to be bewildered. She's been under a Neurologist at Newcastle RVI for many years, but unfortunately there doesn't seem to be anything more they can do. She is literally one in a billion.

Abbi has been left with dystonia, ataxia and dysarthria, amongst other things. She is confined to a wheelchair and is unable to speak. Abbi communicates using sign language and a speech machine that she is able to type into. Even these methods of communication prove difficult due to the deterioration in Abbi's fingers turning inwards, and the pain she is in. She has difficulty swallowing and can choke on food and drinks, so she has a PEG tube. She is in constant pain due to her posture and spasms, and is on medication and has regular botox injections into her jaw for dystonia. She's had numerous stays in hospital. Her independence and the chance of anything that resembles a "normal" life have been stolen. Life has been difficult.

Having a degenerative condition means that she relies on 24/7 care in every aspect of her daily life, from getting up to going to bed. Abbi is hoisted out of bed, taken to the toilet, showered and has her teeth brushed for her. She is dressed, has her hair done and is fed her breakfast- all by her Mam. Imagine how that feels for a 32 year old, who still has all of her cognitive abilities and her mind? She is simply trapped in a body that does not work and is slowly deteriorating. Despite all of this, her personality shines through. She has the best sense of humour, and is kind and considerate of others. She is loved by so many people, and is an amazing human being.

So what are we doing, and why now? For 21 years Abbi has battled this cruel and heartbreaking condition. We have no idea how her illness will further develop. We were told at the beginning that she might not make it to adulthood, but she is still here, and she is still fighting. Unfortunately, around 5 weeks ago Abbi became seriously unwell. She spent over a week in hospital having numerous tests, but in true Abbi style, they were unable to find a cause. It's still extremely raw for us as a family to share the full details of, but Abbi was suffering from hallucinations, confusion and agitation; her whole mental state changed. Our biggest worry was that this was her condition worsening, but for now, Abbi is being treated as having delirium. That sharp mind and smile have been taken, but she is slowly making progress, and we're hopeful that it's not forever. It's been a truly traumatic time for us all, and it's made us realise that we have to do everything in our power to ensure that Abbi has the best life possible and creates the most beautiful memories.

Abbi has never, and will never be able to work. She relies on disability benefit, and the little amount she gets helps fund a place in a day centre 3 days per week. This gives Abbi the social interaction she needs, and her Mam the respite that she deserves. Abbi's Mam, Carol, her Dad, Paul, and Sisters Nicola, Holly and Jade, her wider family and her friends have always made certain that she enjoys her life to the fullest. Whether that be holidays, travelling, days out, events, gigs or nights out with family, friends and loved ones. Abbi adores all of these things aswell as having new experiences. She's been so lucky to do some of the amazing things she's done, and she has never gone without, but we want her to do even more whilst she still can.

This fundraiser is simply a gift- not for treatment or equipment, but for Abbi herself. A chance for her to experience the joy she gives so freely to others. It’s about giving Abbi the freedom to choose what she wants- to do the things that make her heart full and her smile shine.

This is where you lovely people can come in and help. To try and raise some well deserved funds, her Dad Paul, and family members Lee and Antony, are doing a sponsored cycle ride on August 30th. They'll start in Annan in Dumfries and Galloway, and follow Hadrian's wall, down to Whitley Bay, Tyne and Wear- a distance of approximately 100 miles in one day! Her Uncle Scott will travel up from Essex, and will be on hand in a vehicle, acting as personal pit crew. It won't be an easy task, and is a significant physical challenge.

We hope you are able to donate whatever you can to the cause. Let's honour Abbi's strength and determination, and give her the gift of living life her way. Please have Abbi in your thoughts at this time. Thank you.

For Abbi, with love.