April 1000km Fund Raiser!

Calling any friends & family who want to sponsor us in our challenge to complete 1000km in April to help a beautiful and kind soul with her recovery after a terrible ordeal. Please read more below…

 

My beautiful friend of over 30 years, Nicole has been dealing with health conditions for several years but this time last year, she was suddenly taken into hospital where she suffered horrific symptoms causing massive changes to her life.

 

After several tests the neurologist diagnosed her with Guillain barre syndrome with miller fisher variant; an autoimmune condition that attacks the nervous system. She was very scared, alone (due to Covid measures) and paralysed from the waste down, unable to walk, talk, swallow or even close her eyes. Her condition then deteriorated and she was moved to icu. As if her situation wasn’t bad enough, she also developed pneumonia and was struggling to breath on her own. The doctors decided she needed to be sedated, put on a ventilator and a tracheotomy fitted, this was serious!!!

 

When she was finally woken up, a new set of challenges began. She needed to be hoisted out of bed to be put in a special wheelchair for her just to sit upright!!!

 

In April Nicole’s tracheotomy was removed and she was transferred over to another hospital where she had some physiotherapy and learned some very basic tasks. The realisation of the whole ordeal started to set in and she missed all the noise and laughter of her busy houshold, sitting round the dinner table listening to stories of work, uni, college and school and the sound of her two dogs barking at the window as strangers walk by. Her heart ached and she needed to be with her family.

 

After 5 long months away from home and some adjustments round the house Nicole came out of hospital, still unable to stand and walk. With her feeding tube still in place, suffering with fatigue, balance and coordination issues, she also suffered with ‘pins and needles’ sensations in her hands and trunk. Even though her struggle was so intense, she feels miles happier being back close to her family.

 

Nicole has since relearned how to walk short distances with a Zimmer frame. She has also relearned to eat and drink on her own. Her voice is still weak, but a lot better than before. She is however still in a wheelchair most of the time and finding the challenge of not being able to independently complete tasks as she did before extremely upsetting and frustrating. It could take years to recover as the nerves only repair at 0.5mm per day! The treatment is all about repetition and when your exercising on your own you can only do so much.

 

Nicole is such a beautiful person inside and out and I am so proud of her because she is constantly researching and trying to find out what to do next that will help. She is a fighter and is determined to make a full recovery.

 

The most frustrating thing for her now is that she has to rely on everyone around her for pretty much everything. Her family including her husband and 3 sons have and continue to be amazing and all help out as much as they can but she wants and mentally needs to get back to a place where she can be independent again and looking after all the the things that she did before.

 

Nicole is desperate to keep progressing but is stuck with what to do next. The condition she suffered with is a rare one and as such there is limited knowledge. Her Physio has even told her that he doesn’t know what else to do and has left her appointment as ‘open’.

 

The great news is, there is a specialist neuro smart unit with state of the art equipment in Bristol. But it doesn’t have any inpatient facilities, therefore making it difficult. Nicole would need to go for an initial assessment first which is £190 and then there are several packages but they are not cheap. Whichever one they come up with, will mean her and her husband would need to commute to Bristol every time or maybe travel up and stay over for a couple of days a week for however many weeks.

 

Here are some examples of the packages which will be recommended after the initial assessment:

 

1. 20 hours treatment package - £2,050 (includes at least 2 hours of admin tasks and report writing)

2. 40 hours treatment package - £4,075 (includes at least 3 hours of admin tasks and report writing)

3. 60 hours treatment package - £6,050 (includes at least 3 hours of admin tasks and report writing)

4. 80 hours treatment package - £8,000 (includes at least 4 hours of admin tasks and report writing)

 

It is so difficult to watch someone you love go through so much and feel helpless. So I’ve decided to find a way that will hopefully make a difference to her and that is to raise some money to help get her into this facility.

 

So what is the plan I hear you say?

 

Sponsored sports mileage!

 

During April, a number of wonderful friends and family have pledged to achieve 1000km to raise money to help get Nicole the specialist rehabilitation she needs.

 

Thank you for taking the time to read through and to sponsor us :-)