Emily's Battle with Batten

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On 20th January 2022 our hearts were broken when we received the devastating news that our beautiful 10 year old daughter Emily has a life-limiting condition called Batten Disease. Batten Disease is a rare neurodegenerative disorder that causes blindness; epilepsy; difficulties sleeping; the decline of speech, language and swallowing skills; and a deterioration of fine and gross motor skills that

result in the loss of mobility. Unfortunately there is no cure for Batten Disease and children suffering from this condition don't often live longer than their teens. In 2020 Emily started to lose her vision and is now severely visually impaired and on the blind register. Her sight continues to deteriorate and we don't know how much longer she will be able to see for. This has been tough for Emily but not once has she complained and she still tries to give as many things a go as she can. Her speech is now regressing too, which can be frustrating for her as she has so much she wants to say but really struggles to get her words out clearly. Emily is the kindest, sweetest, most gentle and loving girl that you could ever meet. She does not have a bad bone in her body and her happy nature can't help but make you smile. She loves to talk (we literally can't stop her sometimes) and she keeps us laughing every day. Her strength and resilience the last few years make us beyond proud, she doesn't let this disease get her down and always has a smile on her face. Emily has a lovely relationship with her big brother Lewis and I'm devastated too, for him, that he will have to watch his little sister get so poorly. Neither of them deserve for this to be their childhood. Another thing you should know about Emily is that she LOVES Harry Potter! I'd even go as far as saying she is obsessed! She often tells us to call her Harry and not Emily and spends most of her time at home in her Gryffindor robes whizzing around on her broomstick. When we left the hospital in January we were told to go away and make as many memories as we can with Emily. So that is what we plan on doing. Unfortunately this disease can progress quickly so we don't know how much time Emily has to be able to have new experiences and create those memories. Our aim is to raise some money in order to be able to do as many things as we can with her from her bucket list. We would love to take her for a meal at the Leaky Cauldron and wand shopping at Ollivanders, to see The Cursed Child on the West End in London, or on a holiday where she can spend carefree hours splashing in the pool. We know these things won't all be doable but Emily deserves the world and more and we will try our hardest to give her the best life possible. We will be organising lots of fundraising activities so if you'd like to get involved please contact us.

22/08/2024

We're so incredibly proud of Lewis exceeding his expectations with his GCSE results. He doubted himself but we knew he would do well.

His high school journey has been difficult, with Covid and online schooling as well as Emily's diagnosis, but he never used it as an excuse and just ploughed on and tried his best.

It's been a busy week for him with 3 job interviews, ready to start an apprenticeship next month. We couldn't be prouder of the amazing young man he is ❤️

18/08/2024

We are looking for a few more stalls for our clothes swap fundraiser if any local businesses are interested? It is £10 for a space and tables are included. Set up is from 1pm at Darby & Joan Hall in Cottingham. Please pop us a message if you would like a stall 😊

Photos from Emily's Battle with Batten's post

18/08/2024

What a lovely day out we had at Yorkshire Wildlife Park with Sight Support HEY this week ❤️

Emily loves animals and had the best day learning about all of the ones that live at Yorkshire Wildlife Park. Her favourites were the lions and the polar bears. And of course we couldn't come home without a new teddy 🙈 meet Frosto the polar bear 🐻‍❄️

16/08/2024

🔸Trusts and Foundations Officer job role!🔸

We are looking for a new member of our fundraising team!

We are seeking an experienced Trusts and Foundations Officer to join the fundraising team at the Batten Disease Family Association (BDFA). Home based with occasional travel to Yorkshire.

We’re looking for an individual who has the experience and skills to manage and nurture relationships with our existing funders from charitable trusts, foundations and other grant-making bodies, ensuring they feel inspired by our work and the patients and families we support.

To see more about the role and apply, click on the link below,
http://www.bdfa-uk.org.uk/jobs/

Apply by: 13th September 2024

Please share!

Fantasy Premier League, Official Fantasy Football Game of the Premier League

15/08/2024

Just one day left to get involved in our fantasy premier league ⚽ 🏆

Deadline is tomorrow at 6.30pm

We're at 15 participants currently so the pot is looking pretty good for the winners 💰

Feel free to invite any football loving family and friends, the more the merrier 😊

All in the name of fun and Emily's Battle with Batten 🧡

Fantasy Premier League, Official Fantasy Football Game of the Premier League Official Fantasy Premier League 2024/25. Free to play fantasy football game, set up your fantasy football team at the Official Premier League site.

10/08/2024

Less than a week left to join our fantasy premier league. Please share with your friends and family, the more the merrier 😊

02/08/2024

With just two weeks before the start of the Premier League we have set up our Emily's Battle with Batten Fantasy Premier League. If you would like to be in with a chance of winning some money and support Emily's Battle with Batten in the process then please join our league.
https://fantasy.premierleague.com/leagues/auto-join/l2yejp
League entry code: l2yejp

£20 to enter

£10 will go to Emily's Battle with Batten and £10 will go in the pot. At the end of the season the pot will then be split with the winner getting 70% and the runner up getting 30%.

Once joined let us know and we'll send payment details across.

Please share this post and let's get as many people involved as possible ⚽️ 🏆 🏅

30/07/2024

We had a lovely day out at the beach with Sight Support Kids and Rewilding Youth last week 😊 we played games on the beach, explored rock pools and hunted for fossils 🦀 Emily loves the beach and was absolutely in her element 🧡

28/07/2024

We have been given some funding to hire a direct payment worker for Emily to allow her to have some social opportunities in the community whilst enabling her independence. And to allow us to have some respite from our caring role and be able to spend time with Lewis.

Contract Type: Permanent
Location: Cottingham
Rate of pay: £12.50
Hours of work: 4 hours per week term time and 6 hours per week during school holidays
Days/Times: flexible

The role will involve spending time with Emily doing things that she enjoys e.g playing football, playing board games, reading, baking, etc as well as activities outside of the house e.g cinema, bowling, mini golf, etc. Driving licence and own car would be required for this role.

Closing date: 05/08/2024

DBS/Reference checks will be required for this post – Cost to be met by the local authority.

If you are interested in this role or have any questions please send us a message or to apply for this vacancy please click on the following link:

https://eryc.link/childrens-services-direct-payments

25/07/2024

Today we said goodbye to Emily and Lewis' great granny 💔

We feel so blessed that both Emily and Lewis have been able to know their great grandparents and create an amazing bond with them ❤️

Granny loved Emily ☺️ she loved hearing her stories about what she had been up to since her last visit. She loved meeting all of her teddies and having a cuddle with them. She loved watching Emily playing with her toys (usually laughing at her pretending to ride a broomstick or something else Harry Potter related, and making everyone else join in). And she would always ask if Emily wanted to stay when the rest of us went home 🤣

Emily will definitely miss her great granny but has so many wonderful memories to treasure ❤️

23/07/2024

❤️ 🦯

First ever 'Blind Barbie' doll released

20/07/2024

Year 7 completed ❤️
Last year Emily made the move from mainstream to a special school. This was a huge decision for us and we weren't sure how Emily would get on in a new setting. I can honestly say it is one of the best decisions we have ever made.

Emily has been so much happier at school this last year and made some lovely new friends. She has gained so much independence and her braille skills have improved so much. She has been on many trips including an overnight residential which she absolutely loved!

I am so proud of Emily and her attitude this year. She is often put in positions outside of her comfort zone and she gives everything her all, without any complaints.

Thank you to all of the staff who have worked with Emily over the last 12 months. You have all been amazing and a huge part of her growth this year ❤️

12/07/2024

Happy 16th birthday to Emily's big brother 🎈🎂🥳 have the best night at your prom because you absolutely deserve it! You keep us laughing on a daily basis which is definitely what we need right now. We couldn't be prouder of you and all love you more than you know 😘

04/07/2024

We can't thank Tigers Trust enough for the work they have done with Emily since she started at Riverside in September. Especially Marc who works with her every week and also accompanied her on her mascot experience with Hull City. Emily has grown so much in confidence with her sport and p.e sessions over the last few months and it is so lovely to see 🧡

04/07/2024

03/07/2024

We are now on TikTok 😊 so please give us a follow
https://www.tiktok.com/?_t=8niVNUXrE8G&_r=1

29/06/2024

We would like to say a huge thank you to everyone who joined us for our Fundraising Football Match last Saturday. It was a great day as always!

A massive thank you to our good friend Jo Symington who, despite having a 4 week old baby, helped organise this fantastic event.

A huge thank you to all of the players who put on a great game of football. And also everyone who came down to watch, we always appreciate all of your support.

A special thank you to Adamson Images for photographing the entire event and capturing the spirit of the game and day so well.

Thanks to North Cave Sports & Social Club for allowing us to use their facilities and being great hosts.

In total we managed to raise a total of £446.30 🎉🥳
We can't wait for the next one. 🧡⚽🧡

20/06/2024

Last day of school today for Lewis 🥹 our beautiful boy who we have the absolute privilege of calling our son ❤️ we couldn't be prouder of his attitude, resilience and perseverance the last few years. We feel very lucky to have a teenager who honestly causes us no bother and still wants to spend time with us 🤣 Enjoy your summer before the next chapter begins ❤️

20/06/2024

This Saturday we have our Fundraising Football Match ⚽ come along and watch a fun game of football and support Emily's Battle with Batten 🧡

19/06/2024

🔸It’s Double Donations Week at Give as you Live 🔸

If you’re planning to shop online this week, please do consider doing so through Give as you Live Online so you can earn cashback as donations for the BDFA for every purchase you make (at no extra cost to yourselves!).🧡

Get DOUBLE the usual donation at Dunelm, Confused.com, Tu Clothing, Boots and many more by shopping through Give as you Live. Plus, there are QUADRUPLE donations from some of your favourite stores, just in time for summer!

Shop and raise here: https://giveasyoulive.com/double-donations-week?utm_source=charitytoolkit&utm_content=131525&utm_medium=post&utm_campaign=doubledonationsjune24

Thank you🧡

17/06/2024

🌟 POSTPONED 🌟
Unfortunately, due to unforeseen circumstances, we have had to postpone our Clothes Swap Fundraiser. It will now be taking place on Saturday 28th September.

We are looking for a number of stalls for the event. These will be £10 and tables will be included, so if you are interested in a stall for your business just pop us a message. These will be given on a first come first serve basis.

If you would like a ticket for the event please follow this link:
https://www.ticketsource.co.uk/Emilys-Battle-with-Batten/t-noglndz

If you would like to donate some clothes please pop us a message. We look forward to seeing lots of you there 😊

16/06/2024

Happy Father's Day to the best dad in the entire universe ❤️

16/06/2024

Last Sunday, Batten Disease Awareness Day, we spent the day with Emily's little cousins biking the Humber Bridge. We were all sporting our orange clothes in the hope of grabbing some attention and raising some awareness.

It was very cold, especially when it started to rain. But this didn't stop them! In fact I think it made them go quicker 🤣 They powered through the wind and the rain and made it across and back again with smiles on their faces 🥰

We can't thank the boys enough for wanting to do this for Emily and helping us raise some all important awareness of Batten Disease. They really are the sweetest little lads ☺️

Thank you so much to everyone who sponsored the boys, they are over the moon to have raised £100 for Emily 🧡

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