Louise Wood

Charities

The Legacy Rainbow House
The Legacy Rainbow House help children with acquired brain injury, multiple disabilities and complex health needs. We aim to develop a child’s physical, emotional and social wellbeing, whilst increasing their health and reducing the likelihood of secondary conditions due to a primary disability.
The Daisy Garland
A family-run national children’s charity providing active support for children with drug-resistant epilepsy and their parents/carers. The charity was set up in memory of our daughter Daisy who tragically died at 6 years of age from SUDEP (sudden unexpected death in epilepsy patients). We provide NHS hospitals with ketogenic dietitians - a medically recognised and accepted way of treating drug resistant epilepsy. This diet is not widely available on the NHS due to lack of funding. We also provide grants for night-time breathing monitors to children with drug-resistant epilepsy.

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Louise Wood's fundraising page

Fundraiser: 
Louise Wood

My page: http://uk.virginmoneygiving.com/LouiseWood34

First of all thank you for taking the time to read my story; I have set myself a challenge of running 12 10ks in 12 months, (where surfaces allow I will run with Alicia) to raise some money for 2 charities in particular that have helped Alicia and myself.  As Alicia is approaching 10 it seems like the right time to give something back to these charities to help other families who will be starting on their journey of having a disabled child.  Both charities were a lifeline and for that I will be forever grateful.

Through Virgin Money Giving, you can sponsor me and donations will be quickly processed and passed to charities. Virgin Money Giving is a not for profit organisation and will claim gift aid on a charity's behalf where the donor is eligible for this. I really appreciate all your support and thank you for any donations.

The story of Alicia

10 years ago and on the 17th November my life changed forever for the better, Alicia Jayne was born at 6.30 pm at 38 weeks.  She was just perfect; she had the smallest button nose, big beautiful eyes and long delicate fingers.  My world was complete and I couldn’t believe she was mine.

The first few weeks were perfect, she was a content happy baby who fed and slept well.  I couldn’t believe what a good baby she was!

At 3 weeks old she required a routine hearing test when we were given the news that she could not hear. I was in a state of shock because I had never expected that anything at all would be wrong; she could not even hear a jet plane taking off which was the most heart-breaking and devastating because everyone hopes that their child will not have any health problems.  Alicia was soon given the tiniest of baby pink hearing aids and after the initial shock our positivity returned and off we started on a journey of doing everything and anything to help Alicia hear and speak presuming at this point she would be able to live a relatively normal life.

As time went on I realised this wasn’t the case, she wasn’t giving the eye contact other babies were giving and I was certain she couldn't see, she wasn’t interested in toys and wasn’t getting stronger physically, her head was still very floppy, she could not grip anything and she was nowhere near being able to sit up on her own.

After many months of trying to get someone to take my concerns seriously and trying to get the support and assistance we needed, at 10 months old we got referred to many other professionals such as physios, occupational therapists, pre-school support, teacher of the hearing impaired, teacher of the visually impaired, neuro-surgeons and genetic doctors to help Alicia get the support she required and to investigate to see if we could ascertain a diagnosis.  Alicia had appointment after appointment to try and get to the bottom of why she wasn’t developmentally where she should be.

This diagnosis never came and still to this day it’s a mystery why she is like she is.  She is however, a very happy and content little girl who’s smile lights up any room and who’s giggle is contagious!  She loves a good piece of chocolate cake too….a girl after my own heart!

The Charities

From the age of 12 months to 3 years I took Alicia to Rainbow House in Ormskirk twice a week to attend sessions of conductive education to aid with Alicia’s physical strength and improve her sitting posture etc. 

Rainbow House was established in 2001 in the village of Eccleston; it was unbeknown then just what an impact it would have on the lives of many people…

The founder, a local mother of two little boys who both inherited a rare genetic condition wanted to ensure she could give them the best life chances possible, and believed she could help others like them. It was through her research and determination that Rainbow House was created, providing a specialist service called Conductive Education (CE) to children with disabilities.

Essentially CE teaches skills to empower people with disabilities to lead a more active and independent life. The aim is to help each individual achieve his or her full potential. 

Alicia developed well from the sessions and during the sessions did manage to carry out supported walking using a ladder back chair and her sitting positions improved a great deal.  I think it gave us as a family a glimmer of hope that Alicia would be able to perhaps walk at some point, at the time this is what we needed, it gave us some positivity.  For the majority of the 2 years we attended Rainbow House these sessions were free and fully funded through the charity and for that I will be forever grateful.

http://thelegacy-rainbowhouse.com/

When Alicia was 12 months old she started to have frequent seizures, prior to this she was a smiley baby with lots of giggles but from the moment the seizures started we lost a part of Alicia, she wasn’t as smiley and almost lost some of her personality.  As her medication increased her social skills decreased which was devastating, I felt like we were losing a part of Alicia each day.  I took to the internet to look for alternative therapies to prevent Alicia’s social skills decreasing even more.  I came across a charity called the Daisy Garland Charity that had been set up by the mum of the late Daisy Garland who had passed away, gently in her sleep from sudden unexpected death in epilepsy patients tragically died following a seizure at the age of 6. 

The charity believes the ketogenic diet can help and reduce seizure when medication may be of little or no effect.  The charity to date have funded 14 Daisy Garland Ketogenic dieticians throughout the UK and to assist with a diet called ketogenic diet (each dietician costing up to £47,000 per year) which is proven to help reduce seizures without the need to medication and their nasty side effects.  The diet is not widely available in the UK due to the lack of NHS funding. The diet is a rigid mathematically calculated doctor supervised diet which alters the body’s chemistry by stimulating the metabolism of a fasting body.  The diet is high in fat and low in protein and carbohydrate and is formulated to sustain the state of ketosis within the body.  I immediately contacted Sara the founder of the charity (mum to the late Daisy) who agreed to fund Alicia a placement on the ketogenic diet.   We started the ketogenic diet funded by the charity which involved a week’s stay in Nottingham hospital in March 2011.   Unfortunately after following the diet rigorously and monitoring Alicia’s seizures we came to the conclusion that the diet was not working to the full potential and we unfortunately had to revert back to medication to control the seizures.  I will be forever grateful to the charity for giving Alicia the opportunity when at that point it seemed like the only chance Alicia had to prevent her seizures and prevent Alicia's development for deteriorating even more.

http://www.thedaisygarland.org.uk/

The challenge

1. Sunday 9th October    Alder-Hey 10k

2. Saturday 4th November          Cheshire 10k

3. Wednesday 15th November Manchester 10k run in the dark

4.Sunday 31st December          Clitheroe 10k

5. Sunday 11th March     Manchester Winter Run

6. Sunday 8th April Fleetwood 10k

7. Sunday 12th May Rainbow House Ramble (10miles)

8. Sunday 20th May Manchester 10k

9. Date to be confirmed Burnley 10k

10. Date to be confirmed Wigan 10k

11.  Sunday 16th September 2018            Bury 10k

 1 more to be confirmed!

Better get training!!

Thanks again for your time and donations in advance, it really does mean a lot.

Louise and Alicia xxx

 

 

Offline fundraising

Annette and Stu Jenkins £20.00 plus £5 gift aid

Joanne Glover £10 plus £2.50 gift aid 

 

Recent donors

09.10.17 Good luck and best wishes, Lynne

08.10.17 Good luck Louise xxx

08.10.17 Good luck.

08.10.17

05.10.17

02.10.17 Good Luck Louise x

01.10.17 Good luck Louise xx

29.09.17 Hi Louise Very best of luck with your 12 10K challenge. Julian x

28.09.17 Good luck! Xxx

28.09.17 What a great thing to do. Hope you complete the challenge you have set yourself.

27.09.17 You’ve done great well done

26.09.17 All our Best Wishes for completing your challenge Louise , for a very well deserved charity . Love to you both on this , Christine and Eric xx

26.09.17 Quite a challenge Louise! Sure you'll complete all the runs - for a very worthy cause and a special little girl - Dot and Keith xx

24.09.17 Love daddy xxx

23.09.17 Wishing you lots of luck!

23.09.17 Great cause and good luck with the running!

22.09.17 Brilliant Louise! Can't wait to hear about your journey through the year doing this.

22.09.17 Beautifully written from the heart! All the love and luck in the world to a beautiful girl and an AMAZING Mum.xx

22.09.17 Good Luck!

22.09.17 Good luck Louise with your challenge, you are doing a wonderful thing XX

22.09.17 This is a really amazing thing you are doing. Good luck with it all x

22.09.17

22.09.17

21.09.17 Good luck!

21.09.17 Good luck, Louise - such an amazing thing to do x

£790.00

Running total

Total raised incl. Gift Aid:
£970.00
Total donors:
35
Last donor:
Lynne Syddall
09.10.17  
Offline fundraising:
£60.00
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