Jacqueline Slater is fundraising for Great Ormond Street Hospital Children's Charity (GOSHCC)

Slater Fundraising Page

BETHAN-MAY

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Raising money for

Great Ormond Street Hospital Children's Charity (GOSHCC)

Charity Registration No. 235825

Help keep the magic alive for thousands of children

Every year we need to raise over £50 million to help replace cramped, outdated wards with new modern facilities, provide essential equipment and fund essential research to find treatments and cures for complex and difficult illnesses. Amazing things happen at Great Ormond Street Hospital every day. With your help we can keep the magic alive for the thousands of children and their families who need our help.

Page owner

Jacqueline Slater

Page closes

29/09/2010

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Raised: 11%

Target: £100,000.00
Raised so far: £10,600.24

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My story

WELCOME

....to our justgiving page and helping us to make a difference by joining us on our mission to raise so much money for Dermatology Research for Vascular Abnormalities at Great Ormond Street Hospital (GOSH) in London. This is not just about asking for money specifically for Bethan-May and the other 14 children with Glomuvenous Malformations (GVM) who go to GOSH, but for wider Dermatology Research at GOSH. The Dermatology team network worldwide, so these funds will help them learn more about GVM and many other vascular abnormalities. This will help them find a way forward in treating Bethan-May and the other children with GVM. A greater understanding of GVM is needed with a hope of finding a way to stop progression, pain management and to enhance their quality of life, as well as the lives of many other children with Vascualr Abnormalities.

BETHAN-MAY SLATER'S STORY

Bethan-May was born 12th July 1999 with a very rare skin condition. In March 2002 she was diagnosed with Glomuvenous Malformations (GVM). This was the first GVM diagnosis for GOSH, and also the first in the UK. Since then they have diagnosed 14 other children. Our Dermatology team at GOSH are truly amazing, with their constant determination, dedication, support and drive to network worldwide, share and learn from others about GVM.

GVM has many presentations and Bethan-May is ticking a lot of the boxes. When born she had 25% coverage, and now at the age of 9 she has 75% coverage. Her skin has purple vascular lesions from head to toe which make skin temperature control difficult. She has experienced pain and discomfort since birth, which increases with progression of GVM. It is now behind her eyes, which is of great concern. She has been on oral chemotherapy since January 2008. This is yet again a first for a GVM patient but we are hoping it will give some management until research can give more answers and control.

UPDATE Well March and April have not been without their challengers for Bethan-May. Bless her... medication had to be changed and pain came back, meaning she has had to use crutches to mobilise for a period. We are now in limbo so to speak awaiting the next treament to maintain control of condition...but she continues to push her self and stay active. Will keep you posted. Cheers Jacqui..ps thanks for your prayers and continued support! xoxoxox

UPDATE It's now October 2009 fundraising is still going strong. Thank you all! Bethan-May has now been off the Oral Chemo since first of May and to date no signs of progression. She had biopies taken in July and GOSH are now testing to find pathways to block/control in order to get better managment on the progression of GVM. Meanwhile we continue to pack in the fun and take each day as it comes.

WEB PAGE UPDATE

We now have a holding page! www.livingwithgvm.co.uk Getting closer to the real thing.

EVENTS

MERCIA MILE AT COVENTRY 25TH OCTOBER 2009

A huge thank you to Bethan-May's Godmother Marianne Smith who despite living with debilating pain organised the most amazing group of folk from Coventry to take part in the Mercia Mile...see the photo on the Mercia web site No 112 and you will see some of the bunch. Huge thanks to Centre Stage Dancers and Carl the owner and Marianne's family especially Shelly for being there and getting Damien, Simon to do the 1/2 Marathon. Thanks to Mark, Daddy to wee dancer Morgan who did the 1/2 Marathon too in less than 2 hrs WOW!! Bethan-May and I got to join Amy, Marianne and Centre Stage in wearing purple and doing the mile, the weather was amazing as was the atmospher and the good folk of Coventry. Thank you so much for your support and Phil for helping Marianne to make this happen. Hugs of thanks from us to you all xoxoxo

CHARITY OPEN GARDEN

4th July 2009 held at The Flower Garden of the home of Emma and Steve Carling in connington Peterborough. An amazing day details to follow. Raised £801.00!!! Thank you all!

HAYLEY DAWSON This amazing lady is a friend of a sister whose sister is a friend to us, who we have yet to meet! Hayley was told about Bethan-May & our mission. Hayley decided she wanted to help & WOW read below and go to her justgiving page www.justgiving.com/hayleydawsondouble just see what she is doing!

Many thanks Hayley WHAT A STAR big hugs from the Slater Family

- London Marathon April 2009- done 4 hrs.30.35mins

- Olympic Distance Triathlon

(Mepal Lakes 16th Aug 2009)

:- 1.5km Swim in Open Water i.e. 60x25m

:- 40km Bike (24 Miles)

:- 10km Run (6 Miles)

HAYLEY has raised over £800 and it is still climbing. We will get to meet you SOON

Bye from the Slaters.

MORE THANKS

TO ALL AT STEPHENSON SMART & CO ACCOUNTANTS PETERBOROUGH WHO INSTEAD OF DOING XMAS CARDS TO EACH OTHER HAVE DONATED OVER £300.OO TO OUR FUNDRAISING. THESE GUYS ARE OUR ACCOUNTANTS AND ARE EXCELLENT SO IF YOU LIVE THIS WAY AND NEED AN ACCOUNTANT GO TO THEM AS THEY GET IT RIGHT!

HUGE THANKS TO THE VERY GENEROUS GENTLEMEN FROM THE DR OLIVER LODGE PETERBOROUGH WHO HAVE MADE A LARGE DONATION OF £500.00 ANDTHE GENEROUS GENTLEMEN FROM THE PROVINCIAL GRAND CHARITY OF NORTHAMPTONSHIRE & HUNTINGDSONSHIRE WHO GAVE US £500. THANK YOU FOR HELPING US MAKE A DIFFERENCE!

GOSH BOYS ON BIKES 2009

Andy and Mark did the cycle ride from GOSH to our home in Peterborough on the 5th of April 2009. They clocked up approx 89 miles in the end, the day was kind with sun and little wind. They arrived safe and sound after 7hours 40mins on bikes to an awaiting with pride a large group of family and friends to celebrate in true Kiwi style with BBQ and yummy food. Well done guys and thank you to all who sponsered them to help us make a difference.....Over £1300.00 to date. Huge thanks from the Slaters. Thankyou Dilegenta and GOSH for raising £400

PURPLE POWER

At Orton Wistow Primary School on the 3/4/09 Bethan-May organised a non uniform day but with a twist, "you had to wear something PURPLE".

Her friends and Mrs Cooper and Libby baked loads of cakes with PURPLE on them. Total raised on PURPLE DAY is now £760.00. Thank you all for your support in helping to make a difference.

Love Bethan-May

SRI LANKAN EVENING 28TH FEB 2009

Huge thanks to Michelle & David New for having the idea and making it happen. An Amazing £1043.50 was raised by an evening of Sri Lankan food and good company...details will be on our web site soon!

Thanks again from the Slaters

A few off line donations have now been added and thanks need to go to ... The First Orton Wistow Brownies from their Xmas show £105 raised WOW...also thanks to the Hillington Ladies Choir in Leamington Spa and our good neighbours Rosemary and Bob. Thank you all for your support..hugs of thanks from the Slaters

We have just received a huge donation from our very special family friend ...Uncle George... who has known four generations of the Slater's. He is an amazing gentleman who proudly admits to being the ripe young age of 91 yrs. It is such a joy to have him in our life. Thank you, thank you, thank you with all our hearts, we love you loads.

40's QUIZ NIGHT

In November 2008 many friends at St Andrews Church Alwalton Peterborough had a crazy 1940's Quiz Night. They insisted on it being an evening to raise funds for our mission..Thank you from the bottom of our hearts for your support, prayers and generous donations.

FUN RUN

On Sunday the 12/10/08 we, the Slater Family along with family, friends and lots of Brownies, completed the Fun Run as part of the Great Eastern Run.

Chris from Abacus Tutoring Academy did the half marathon in 2hours and 2mins WOW. Chris has raised over £260.00 Thank you

A BIG THANK YOU to the 1st Orton Wistow Brownies who have raised over £400.

The Elliott family thank you so much...they have raised £181.00.

Thank you all so much for your help, support and prayers we so appreciate your help.

INFORMATION

If you would like to talk about GVM please feel free to contact Jacqui.

jacquislater[at]btinternet.com

I will be pleased to give you time.... and keep looking for our web site as there will be information linking to GOSH.

HOW TO DONATE

We previously have done fundraising for GOSH, but now we need to raise £'s directly for the Dermatolotogy team. If you can help in any way we will be extremely grateful.

Donating through Justgiving is quick, easy and totally secure. The funds we raise will go directly each month to the Dermatology Research fund for vascular abnormalities SS06D. It’s also the most efficient way to sponsor us: Great Ormond Street Hospital Children's Charity (GOSHCC) receives your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.

THANKS FROM THE SLATER'S

Many thanks to all those who have just come to us with your generous donations. Your support is over whelming. The words "thank you" just don't seem enough... so make sure you keep in touch so we can hug, be there for you, and share l the laughter and fun. Take special care.

Best wishes from

Jacqui, Tim, Bethan-May, Billy Slater and the other children with GVM

PS Many thanks to all those who made a donation in memory of Bethan-May and Billy's Grandma, Janet Slater. Together we raised an amazing £395. Grandma would be very happy with that. Thank you from the bottom of our hearts

Supporter Number for Slaters 40389163 Dermatology code SS06D

	From Sarah Penfold 1st Orton Wistow Brownie from the Great Eastern Fun Run Peterborough 11/10/2009 Donation by Sarah 13/11/09	£25.00
	Many thanks for the Pavlova, it was excellent Donation by Liz 13/11/09	£5.00
	Well done to all those who did the GER and the Fun Run. Donation by Alison Clark 23/10/09	£15.00 + £4.23 Gift Aid
	Money raised from Edinburgh Marathon 2009. Well Done in GER and Fun run this year. Donation by Julie Tebb 13/10/09	£150.00 + £42.31 Gift Aid
	pennies collected from Great Eastern Fun Run 11/10/2009 Donation by Jacqueline Slater 12/10/09	£25.00
	Have a great run on Sunday. PMA all the way. Enjoy! Love Prange Gang Donation by Helen Prange 07/10/09	£20.00 + £5.64 Gift Aid
	I heard of Bethan-Mays story thru Helen Randle, and any friend of Helens is a friend of mine :) God Bless xx Donation by Angie MOTT 28/09/09	£100.00
	May God bless both Bethan-May & GOSH Donation by FEC 27/09/09	£25.00 + £7.05 Gift Aid
	Brave courageous angel We love you very much. Keep fighting - you are an inspiration Donation by anonymous 26/09/09	£100.00 + £28.21 Gift Aid
	A little thank you to the 4 of you, especially Jacqui, for all your help over the last few weeks. We'd never have managed without you. Donation by Suzanne & Steve 10/08/09
	We've heard a lot about Bethan-May from Steve & Suzanne and felt that this was a good charity to donate to. Donation by Ken & Doris 10/08/09	£50.00 + £14.10 Gift Aid
	and more £'s roll in from the Open Garden at Conington total now £840.00 wow!! THANK YOU ALL SO MUCH! Donation by Jacqui 08/08/09	£20.00
	Donation by Anonymous 10/07/09	£20.00 + £5.64 Gift Aid
	..and there is still more to come from the Charity Open Garden at The Flower Garden of Emma Carlings Conington Peterborough. FAB DAY THANK YOU ALL. Donation by Charity Open Garden with Emma Carling and team 09/07/09	£771.00
	Hi Bethan and Jackie good luck with your fantastic work. From Mariannes friend Michelle and all the family. God Bless xx Donation by Michelle Croston 08/07/09	£20.00
	From a friend of Marianne Smith, good luck on your run, I wish you all well. XXX Donation by ELAINE ROBINSON 20/06/09	£10.00 + £2.82 Gift Aid
	Thanks to our friend Susan donating clothes to sell. Had a Fab time doing it with Marianne. Thanks for keeping the fundraising FUN! cheers Jacqui Donation by Car Boot in Coventry 15/06/09	£30.00
	Dear Bethan-May, Congratulations on your Purple Day. Lots of Love Grandma May, Dunedin, NZ Donation by Grandma May.NZ 30/05/09	£390.00
	More from the family friends and colleagues of boys on bikes Mark and Andy with best wishes Donation by GOSH Boys on bikes 23/05/09	£533.00
	you are in my prayers little girl Donation by Anonymous 17/05/09	£10.00
	BB !!!!!!!!!!!!!!!!!!!!! Donation by billy slater 17/05/09	£2.00
	The first amount of the terrific total raised by Mark and Andy's sponsored 89 mile bike ride from GOSH to Orton Wistow. Many thanks for your support Donation by GOSH Boys on Bikes 13/05/09	£381.00
	Hey there Bethan, You and Billy and all your friends looked absolutely fab on 'Purple Day'. Love ya lots, but you already know that. xxxoooxxx Donation by Aunty Shirley (NZ) 30/04/09	£15.00
	AND STILL MORE £'S COME IN FROM THE PURPLE DAY BETHAN-MAY ORGANISED AT ORTON WISTOW PRIMARY SCHOOL 3/4/09 Donation by MORE £'S FROM PURPLE DAY 25/04/09	£10.00 + £2.82 Gift Aid
	Loads of love to my bravest bestest friend Bethan Donation by jessica jarrett 14/04/09	£25.00
	Joined in purple day too. Love to you all.xxx Donation by Amy Smith 09/04/09	£3.00
	WOW WHAT A TOTAL FOR PURPLE DAY AND YUMMY CAKES AT SCHOOL ON THE 3/4/09 Donation by ORTON WISTOW PRIMARY SCHOOL 06/04/09	£750.00
	Happy cycling Andy & Mark from GOSH to Peterborough WOW 85 miles! Donation by Bethan-May & Billy 06/04/09	£10.00
	Good luck Andy & Mark from the start line at GOSH for your 85 miles to Peterborough Donation by Aunty Rachel, Toby & Uncle Gareth 06/04/09	£25.00
	Bethan and Jacqui, for your bravery and diligence. You're an insiration to us here in the U.S.A. Donation by The Duckers 03/04/09	£25.00

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* Total raised online:	£5,177.00
Offline donations:	£5,423.24
Gift Aid plus supplement:	£393.74

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