Hannah Scaife’s amazing Climb of Kilimanjaro for Evie

Hi all,

Firstly, I know it’s been a long while since the last Evie’s Everest update, and this is mainly because of the limited spare time we now have looking after two children, one of whom has significant additional needs!  Evie is 5 going on 6 in December and Emily 1, so it feels like time has really been flying.

However, Evie’s Everest has been marching on – and so has Hannah Scaife who has just climbed Mount Kilimanjaro for Evie’s Everest.

To tell you a bit about Hannah. Hannah, was Evie’s key worker at nursery and has built such a great relationship with Evie that she is one of the few people we can leave Evie with alone, without a manual of key words, signs, hospital records and safety precautions!

She’s been instrumental in Evie’s development to date and now Rachel has started back at work part time, Hannah is helping to care for Evie a couple of days a week after school. So, she’s been massive in helping us to maintain some level of a normal life.

So, Hannah has been training hard over the past 12 months to complete this major challenge of climbing Mt Kilimanjaro. Not withstanding, the snow, altitude and climbing this requires – she actually managed to do this while having some kind of flu type virus. Most people, me included struggle to get out of bed and downstairs to get a drink when hit with the flu, so for Hannah to achieve this is pretty unique and unbelievable. I’m glad to say she has now pretty much recovered from the ordeal (physically at least!).

Hannah has raised over £800 through completing this challenge, which is a fantastic amount that will be put towards Evie’s weekly therapy costs and her additional home care requirements now she is getting bigger.

In terms of Evie’s development, she has come on a lot over the past year in terms of her understanding, communication and stability.

However, she still has major struggles with her hypermobility, joints, managing her emotions and frustrations through lack of ability to communicate her needs, and she is yet to walk independently. We also have major sleep challenges with night waking and wailing, for which we don’t have a solution.

Furthermore, as she grows the behaviours that challenge are more noticeable, particularly in public, so we have to plan ahead carefully wherever we go, to make sure the environment is suitable for her needs and won’t unnecessarily cause her distress.

So, its definitely no walk in the park but the support Evie has received over the past few years has been amazing and continues to help her to develop and live a healthier and happier life than she would otherwise have.

So, thanks Hannah and thanks to everyone who sponsored you, who is supporting Evie in her life.

Adam & Rachel

 

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Huge thanks to Martin Barrick from Evie’s Everest and Evie Update

 

A huge thanks to Martin Barrick who has completed a monumental effort for Evie this year, completing 3 massive challenges despite some nasty back injuries along the way. Amazing effort from a great friend – thanks a milllion, & what a legend!!

1. The Ripon sportive 2018 (cycle ride) covering 100 miles with over 6,250 feet of climb in the Yorkshire Dales on 16th Jun 18.
2. Tough Mudder in Skipton. Half marathon with a multitude of obstacles testing all around strength, stamina and mental grit.  DATE 29th July 18.
3. Manchester Half Marathon. DATE 14th Oct 18

Raising over £1000 which is a fantastic amount & what an achievement!

It’s been a while since the last proper Evie’s Everest update but Evie has continued to try her best and is making some great progress thanks to all the support from her many & growing fans!

She can now stand without support (on a good day with splints) for a good few minutes. She is yet to take her 1st independent steps but we are hopeful that in time with continued weekly physio sessions and supporting orthotics she will do so.

Evie’s weekly physio routine consists of a sports physio session, horse riding with Hannah her prior key worker from nursery, swimming, and rebound therapy. Plus Specialist orthotics consultations in London and Leeds that have helped Evie greatly too.

Communication continues to be profoundly difficult for Evie given her condition, but we are now using a combination of pictures, words, and signs to help Evie get her needs across to those around her. This takes a lot of organisation to have the right pictures to hand at the right moment when they are needed but help reduce Evie’s frustrations / challenging behaviours and help her to make choices. Private speech and language consultations funded by Evie’s Everest has helped us with this.

Evie has also just started school at parklands specialist resource unit in Seacroft and whilst she misses her nursery friends, she is settling in really well now.

She attends a couple of SEN playgroups on a weekend which help her to socialise and learn in an inclusive learning environment.

Medically, Evie has been largely in good health in recent months but was hospitalised for a week following a nasty long seizure last summer, ending up in A&E as she struggled to breathe, then was admitted following CT scan for suspected encephalitis and put on IV meds for 5 days (thankfully MRI scan proved it wasn’t) but a harrowing experience which we hope was a one off. We are still awaiting any news from the national 100,000 genome test so Evie remains without diagnosis.

In more positive family news, Evie has a new baby sister called Emily who born Sept 27th who we all love and adore (see pic). We hope Evie will learn lots from her being around and have a friend for life.

Happy half term!

Evie’s Everest

Thanks Beth and Woodlands Nursery

Just to say a very belated thanks to all the staff at Woodlands Nursery who ran a fancy dress and activities day on 5th May raising £318.88 for Evie. Evie dressed up as a bee as in the picture and has a great day.

Beth Barron also took on the Gung Ho challenge, which encompassed running 5k over inflatable obstacle course in torrential rain, finishing off by sliding down an inflatable slide filled with foam!

Fab effort, thanks Beth – raising £160 for Evie (and all after 2 bottles of wine the night before!) well done you…!

Evie is booked in for another round of intensive therapy for 3 weeks July-August so all the money raised will go towards that.

Thanks a million for the support.

Adam and Rachel

Evie’s Everest Update

It’s been a while since the last post as we’ve been extremely busy with Evie’s therapy, doing two extra sessions every week with a new physio on top of our regular activities.

Sadly, Rachel’s mum also passed away late last year, leaving behind Rachel’s dad Neville – husband of 40 years. Myra (pictured) was a fantastic Grandmother to Evie and will be greatly missed by all.

However, the funds raised last year have been keeping everything going for Evie’s Everest and we are planning more intensive therapy over the course of the year, so thanks again for the continued support from all the kind and generous people in our lives.

We have found a number of charitable organisations who are helping us, in addition to private funding. There are many costly services out there for disabled children that the NHS do not fund, so we take time to decide which are going to provide the most benefit for Evie, using funds raised as wisely as possible (details of Evie’s therapy current programme below).

Evie is doing well, she has learned a number of new signs now (e.g. home, biscuit, driving, wash etc…) and has a handful of words now too which is encouraging (more, mummy, daddy, and Jam to name the most important ones!) although doesn’t use them consistently yet. She does love her food!!

She also keeps growing – so continually needs to re-adjust to her new height/size again, and needs on-going core strength training to help her engage the muscles needed to walk, and grow her confidence to support herself. She also has specialist shoes and in soles to provide support for her hyper-mobile (overly flexible) ankle joints.

We have also had a trike adapted for Evie under the re-map charity, they have a number of engineers who try and solve problems for the disabled with practical solutions to adapt the home and make life easier for those who need help. It’s a great organisation and by making some minor adjustments, Evie now loves here trike, we take her for walks in roundhay park regularly on this which we all enjoy. http://www.remapleedsbradford.org.uk/

Latest on Evie’s diagnosis: we still do not have a specific diagnosis (reason for Evie’s white matter brain abnormality) so continue to have no real prognosis for Evie’s future. However, we are now in the 100,000 genome test where they sequence Evie and both parent’s full genomes with others with rare conditions in the hope they can find patterns / generate diagnosis for undiagnosed conditions in the future.

However, as Evie gets older, her learning disabilities become more apparent as other children around her develop. This is probably the hardest thing for us, as parents to get our head round and accept – why Evie? Professionals and supporters who see Evie always encourage us that given her neuro-developmental challenges she is doing really well and continuing to develop, which helps to motivate us.

She is in the main a happy little girl but one who faces significant challenges/frustrations both now and in the future. With support and daily therapy we are confident both her cognitive skills and her mobility will improve and our aim is of course for Evie to walk independently and be able to talk to us.

We want to thank all Evie’s supporters for their generosity – and with particular thanks:

£628 – fundraised monies from an anonymous donator via ‘tree of hope’ and a further £250 from an anonymous donator – we are touched that people we don’t know are helping our daughter.

A number of Christmas donations also came in after our last blog –

The Simpson family, friends from the U.S.A

Cake Bake/Christmas donations from YBSG – Vicky Brennan, Sean Kenefick, Richard Taylor, Duncan Milne, Dan Topley, Dan Buck, Caroline Brannan, Louise Fox, Janice Barber, Vicky Brennan, Chris P-Haim, Christina Bailey.

Upcoming fundraising events – Woodlands Nursery are holding a dress up fundraising day next Friday, and Lee Steer is planning to do a long distance run later this year. I am also considering doing a 100 mile cycle – however, we welcome all ideas for 2017!

Evie’s Current Programme:

Local weekly neuro-physio – Liat is fantastic with Evie. She puts together obstacle courses both in the gym and in the water, building strength and prompting communications through activities.

SNAPS (Special Needs and Parents Support), a charity that supports local families of those with children with additional needs – a big part of our support network and weekly hydro therapy (for just £7 each week!). https://snapsyorkshire.org/about/

Donkey Sanctuary – (free) weekly donkey riding programme which promote core strength and simulate the movements required for walking. RDA – regular horse riding, which we have just started, 1^st few sessions have been tearful but we are hoping she gets into it like she has the donkeys!

Brainwave North West – we have just taken Evie to two days intensive assessment, therapy, and action planning for us to follow over the year. This consisted of speech and language therapy and physio, Carol and Felicity were excellent and we plan to follow up again in 6 months’ time.

This is all on top of both Woodlands nursery and our daily focus on Evie’s developmental support needs.

Top priorities at the moment are:

• Promoting core strength / training
• Developing Evie’s attention and understanding (to minimise frustration and aid future communication)
• Developing communications strategies/systems – using signing, symbols and re-enforcing known words
• Looking into specialist and mainstream schools / what forms we need to complete now (Education, Health etc..)
• As Evie is growing fast, we are looking at some minor house adaptions to help her mobility around the house (and our backs)

 

Happy Holidays to all Evie’s Everest supporters

Thanks to all the amazing fundraising this year – Evie has developed significantly with funds raised paying for 6 weeks of intensive therapy and regular speech and physio therapies all year.

Evie is now walking with support from her Kaye frame (sometimes reluctantly but she’s doing really well with it!), and continues to make progress with her understanding and ability to communicate what she wants. She can crawl, pull up to stand, crawl up stairs without support, point to what she wants, all things she couldn’t do this time last year.

We have had multiple medical appointments this year, and Unfortunately testing to date has still resulted in no specific diagnosis – but Evie will be entered into a national research study called 100,000 genome test, which we are hopeful that one day, with scientific developments will give us some answers. Evie does get frustrated and upset often, due to her finding it hard to communicate, but we are hopeful that with further speech and language therapy, as well as her gross motor developments, in time, will help to reduce this. In the meantime, we just want Evie to have the best life she can possibly lead.

A massive thank you To Jackie knight and her sister Gina for their successful clothes sales in the lakes and at university. A huge amount of preparation and effort went into co-ordinating this event and it really paid off, with over £420 raised. 

Yorkshire building society colleagues have further supported our cause this week, with 13 people from London south branches cycling 150 miles on 21st December on static bikes, raising £610. Big thanks to Octavia, Dan, Sam, Obi, Mike, Steve, Amy, Adam, Kristie, Nathan, Barry, Emma and Michelle.

Finally, a huge thank you to Boxclever research who instead of sending Xmas cards to clients made another substantial donation to Evie’s Everest. What a thoughtful and fantastic thing to do.

 What a fantastic year it’s been looking back at all the events and support, kindness and generosity from family, friends, colleagues and supporters. We are truly humbled and forever grateful.

Adam, Rachel and Evie

Mike’s 240 Miles across Italy’s Coast and 900 Raffle Tickets Sold for Evie

A huge thanks to the legendary Mike Sketch (my previous boss at Yorkshire Building Society) who has cycled 4 days across Italy from coast to coast – consisting of 240 miles, with 19,000 ft of ascent.

He had an epic journey – here are a few of the highlights and some pics above from his ride…

• Two encounters with Mark Cavindish
• A 10 mile climb taking 80 minutes without stopping
• Cycling through the Chianti with unbelievable views
• Plenty of carb loading on pizza and pasta

Mike has campaigned hard for Evie and raised nearly £2500 (with gift aid on the way) which is a phenomenal amount so thanks very much, Rachel, Evie and I are very grateful.

In the same week, Yorkshire Building Society held a raffle with some fantastic prizes (see pic) led by the great place to work team:

Lloyd Latibeaudiere, Janis Hambling, Michelle Robb, Sharon Nodder, Heather Rawson, Sarah-Jane Bullock, James Underwood, Aaron Keir, Stewart Fountain, Claire Hillier, Benjamin Reed, Chris Wright, Krishna Mistry and Monica Skubiak.

Just to say a monumental thank you for all the support for Evie’s appeal – raising over £1,700 which is amaaaazing!!!!

The lengths I know people here have gone to, to get the OK for this initiative to happen, to rally support, get prizes (see below), administer the whole raffle, sell tickets, and take part in all the meetings and discussions on it.

Truly, feel you have all have hearts of gold for getting involved and really making a difference to my daughter’s life. It gives us one less thing to worry about knowing we have the funds to continue to develop Evie and the support behind us to keep going.

We will always remember the help YBS have all given, so just to say

 

Thank You very much

17 born survivors raise over £5,000

A huge thanks to:

Emma   Keenan, Sarah   Dawson, Kerry Lonsdale, Phil    Lonsdale, Judith Dugdale, Rachel Hough, Claire Cave, Angela Allen, Annabella Towler,  Kirstie Beckman, Leonie Millard, Jenny King, Ben King, Claire Barrick, Nicole Pattinson, Emma Bond.

What a legendary effort by all – thanks for digging deep and completing the gruelling muddy born survivor challenge – 30 obstacles and 10km run.

Special thanks to Emma Keenan for organising such a fantastic event and campaigning for Evie’s appeal. We are eternally grateful for all the support – and feel very lucky to have such amazing friends.

Thank you to Forbes Solicitors who sponsored the sports tops on the day and provided a significant donation, and Pace Technology for their kind donation to Evie’s appeal.

Here’s a few more pics from the day.

Yorkshire’s Everest Conquered for Evie

How’s Evie doing?

Evie has been making some great progress with her new Kaye Walker (see pic) so we can now go for a walk in Roundhay park with her, which is fantastic! She really enjoys down-hills and can now take on a new perspective of life, being upright and a bit more independent rather than sat in her buggy.

To Evie’s delight, last week, we also bumped into Abby – one of the key workers from Nursery, so there were lots of smiles and claps, and her day made!

Yorkshire’s Everest: 3 Peaks Yorkshire Peaks Challenge Completed in 9 / 10 hours (depending on fit bit used/whether breaks are in fact, counted in the overall time or not!)

On Saturday 17^th at 5.30am, 8 elite athletes (well more like regularly fit guys!) made the trip up to the Yorkshire Dales, to complete the 24.5 miles trek, up 5,200 feet – otherwise known as the 3 Yorkshire Peaks challenge.

We started at 7.15, finished around 5pm and it was a fantastic day, we couldn’t have had better conditions or a better group of lads to complete the challenge with.

A massive thanks to all who took part and those supporting the walk:

Jason Sutcliffe, Kevin Crouch, David Vernon, Jonathan Musto, Dave Bullcock, Chris Platt, Simon Gould, Steve Barron

Tremendous effort – we can’t thank you all enough.

The group raised over £2,100 and are still collecting sponsorship – here’s the link to the site if you want to donate.

https://www.justgiving.com/fundraising/3peaksevie

Epic Cycle from Michelle and Big Thanks to Woodlands Nursery

How’s Evie doing?

Evie is gaining confidence in getting around now and loves being chased around the house on her hands and knees. But better than that, she has now started to crawl up the stairs and improve her balance – she still needs some prompting but after c.9 months of daily physio/pushing her up stairs one leg at a time, this is a great step forward for Evie and gives us more hope that she is continuing to develop her physical mobility and motor planning skills.

We have just got Evie a new Kaye walker, so hopefully this will further encourage Evie to learn to walk while supported by a frame. We are doing more therapy as a result of all the great fundraising including, speech and language and physio, it’s a part of our daily life now so keeps us all very busy.

Michelle Robb’s 103 mile bike ride (and my 81)

Michelle has been a massive support in the fundraising so far, raising awareness of the appeal both at work and amongst her network. Michelle completed a truly heroic performance around the ‘Epic’ 103 mile course, climbing over 5000 ft, up 25% gradients in hail, wind and rain – everything the Yorkshire dales could throw at us, it did. I also completed part of the ride (a mere 81 miles!) – maybe next year I’ll do the epic 🙂

With Michelle’s usual high energy and enthusiasm, she has raised a whopping £1,231 for Evie’s appeal – we truly can’t thank you enough. And overall, we have raised around 4k from this event so its been a huge success, thanks again for all the kind donations and well wishes.

Woodlands activity day

A huge thanks to all the staff at Woodlands, Little Dragons and Playaways nurseries in Harrogate (funcare group) who raised over £800 for Evie’s Everest on their nursery graduation day.

The event was a huge success, hosting a fantastic raffle, a treasure hunt, face painting, entry donations, fruit sticks sales, and a dancing dragon (pictured below) it was an fun afternoon event for both the parents and kids involved.

 

Coming soon….

Mike Sketch (my old boss) and Stamford/N&P legend is cycling across Italy in September and has already raised a huge £1,500. Good luck and enjoy the pasta!

Emma Keenan and team are doing the muddy and gruelling Born Survivor challenge.

We’d welcome any more ideas of fundraisers for October onwards to keep the momentum up so please get in touch if you’d like to get involved/or if you are already doing a challenge but would like to fundraise for Evie that would be again, fantastic.

Thanks for your support

Ice Cream, Swings and more Fundraising

Communication is so fundamental to the way we live that most of us take it for granted…for example, without it how would you…

• Find your way to the right meeting room in an unfamiliar office?
  · Order what you want to eat at a restaurant?
  · Express that you don’t want/like something (e.g. the room is too hot)?

And if you couldn’t tell people these things, despite knowing what you wanted, how frustrated would you be?
Communication is a life skill that people continue to develop – and something that for Evie, particularly with speech, is not something that comes naturally to her.
However, following the last three week intensive therapy course, Evie is now pointing and doing some basic signing.
This is a transformative milestone for us as Evie can now make choices for herself. She can sign ‘food’ and then point to what food she wants (normally Weetabix, bananas or ice creams) and she can point to the garden swing, so we know what she likes doing in her down time. She can tell us if she wants to be held by mummy or daddy.
And without the fundraising efforts of supporters of Evie, I believe she wouldn’t be at the stage of development she now is.
We want Evie to continue to progress to live as normal a life as possible, which is why we are continuing to fundraise for another batch of intensive therapy later this year.

A few special thanks this week.

• Kim Donkesley has completed the Harrogate 10k and raised over £450. What a fantastic achievement – thank you.
• The team at Boxclever Research have made a substantial donation to Evie’s Everest appeal, we are really overwhelmed by the support and can’t thank you all enough.