Sturge-Weber UK

Welcome

2012-08-15T17:17:00.001-07:00

Danny (centre) with his cousins on holiday

Who we are
The Sturge-Weber Foundation UK is a voluntary support group for families and adult sufferers affected by Sturge-Weber syndrome, a rare neurological disorder. A registered charity, it was launched in 1990 as a independent group by the disability support organisation Contact a Family.

Sturge-Weber syndrome
This is a rare disorder of unknown incidence and origin; although present at birth, it is NOT thought to be hereditary. Sturge Weber is usually indicated by a birthmark (port wine stain) somewhere on the face, usually involving the eye and forehead, also similar blood vessels on the brain, called an angioma. Those who suffer from SW often suffer from epilepsy, hemiplegia (a weakness or stiffness affecting one side of the body, similar in appearance to that of a stroke), glaucoma and learning difficulties. Symptoms usually occur in the child`s first year of life.

Membership
Membership is entirely free to professionals, sufferers and their families.

Aims

To provide support and information on differents aspects of the syndrome and to raise both public and professional awareness of the condition.
To promote medical research into the causes and treatment of this syndrome.
A Family Weekend is organised every year, usually in October, when doctors and other professionals talk about relevant topics.
A Newsletter is produced and information leaflets are available.

Fundraising

2012-01-28T03:32:00.000-08:00

There are many ways to raise money for the Charity.

We are registered with Just Giving, so if you are holding an event or taking part in a marathon you can set up an events page and if those who give pay tax, Just Giving will claim back the Gift Aid on our behalf.

Isaac loves swimming

We also have ready designed Sponsor Forms if you would prefer to raise money this way.

Perhaps you would like to hold a coffee morning, hold a raffle or turn a special celebration into a fundraising event for the Charity.

Not forgetting our Christmas Cards which are designed and printed free so all the proceeds go to the Charity. We have collecting tins that can be placed in shops and clubs.

Isaac

For more information, please contact our Fundraiser Co-ordinator, Lisa Massingham, 2 Castle Close, Gresham, Norfolk NR11 8RH Tel. 01263 577570 or e mail;-massinghamlisa@yahoo.com

Thank you for considering to fundraise for our Charity. Without people like yourself the Charity wouldn't be able to continue the work of supporting families who have children with this syndrome.

Strawberry Patch Nursery Boxing Day Dip

2011-12-20T08:25:00.000-08:00

This fundraiser has been organised by Staff & Parents from Strawberry Patch Nursery

Some of the staff & parents from Strawberry Patch Nursery in Hempstead Norfolk have decided to brave the cold waters at Cromer beach to do a Boxing Day Dip in aid of Sturge Weber Foundation UK a very special charity that has helped & supported a very special little girl called Angelina.

To read more please vist:-
http://www.justgiving.com/strawberrypatch and read their story

Current Fundraising Events

2011-12-11T03:31:00.000-08:00

To see all the current fundraising events for the Charity at Just Giving please visit http://www.justgiving.com/sturgeweber and scroll down

Frequently Asked Questions (FAQs)

2011-09-11T09:19:00.000-07:00

Laser Treatment

Laser treatment technology has improved dramatically over the last few years and continues to advance. In Sturge Weber syndrome the birthmark is not just a cosmetic issue, some birthmarks can thicken over time and "blebs" can appear. These are raised patches on the birthmark which can bleed when knocked. Laser treatment can help prevent this happening. The child usually has a series of treatments over a period of a few years. Each birthmark reacts differently so it is difficult to give a precise time period.

Treatments can be done under general or local anaesthetic and a test patch is usually done first.

Below is a link to a Great Ormond Street fact sheet on laser treatment.

http://www.gosh.nhs.uk/gosh_families/information_sheets/skin_laser_treatment/skin_laser_treatment_families.html

Q. Do the dots remain after a laser session?

A. The actual laser dots take up to three weeks to go, about 3months later the dots reappear as paler skin, next time they laser the do a dot to dot to join them up and after a few sessions its a more even overall appearance.

Removing glue after EEG

This document is for hints and tips relating to removing glue after an EEG. Please feel free to add your own hints and tips to share with others.

1. Use warm baby oil or olive oil and cotton wool

2. Use warm conditioner, massage in and, if the child will tolerate it, wrap a warm towel around the head for 5 minutes or so.

3. Tea Tree oil

After using these methods use a small toothed comb or nit comb to tease the glue out. After using any oil on the hair, add shampoo before you apply water as it is easier to remove the oil this way.

4. Some people use nail polish remover, I would only use this if you are desperate as the acetone can irritate the skin and only a tiny bit on a cotton bud. Wash off immediately and condition the hair and scalp.

Alexander's Story - who underwent hemispherectomy

2011-07-30T04:49:00.000-07:00

My name is Lynn Buchanan and my son Alexander is 24 on April 21^st Alex has three sisters, his twin Chloe and two older sisters, Laura and Faye. Some of you may remember me as being one of the original committee members when Contact a Family helped us form the Sturge Weber Foundation UK

Alex was born in 1987, pre-internet days so we had no way of finding information. Of course, initially, we had nothing to find information on, we thought everything was fine and Alex just had a birthmark. Alex is a twin and we had to take him and his twin sister, Chloe, back to the special baby care clinic because, we were told, they were two weeks early and small. The staff showed a lot more interest in Alex than they did Chloe and I always thought this was strange. They saw so many babies every week, why were they fussing over Alex so much?

At four months old Alex had his first recognisable seizure. We took him to Alder Hey A&E and he was admitted. He was given a lumbar puncture and we were asked so many questions. He was eventually given a CT scan too but we were never told the results. I was young and naive and assumed that, if there was something to see that they would tell us. How wrong could I have been? Alex was discharged after being in hospital for a week and we were given a bottle of phenobarbitone and a clinic appointment. We were not given a diagnosis or a prognosis, we left thinking Alex had epilepsy, which was traumatic enough.

When Alex was 10 months old he had a vomiting bug and couldn’t keep his meds down so he was admitted to Alder Hey again. It was there that we noticed his right arm was floppy and he wasn’t using it. I was surprised when the hospital listened to me and arranged for a physiotherapist to see him at home. The physiotherapist Alison duly arrived and during her visit mentioned Sturge Weber Syndrome. We looked puzzled and Alison looked horrified. “Don’t you know?” We told her we didn’t and she said that she received a note with “query Sturge Weber Syndrome” That is how we discovered that Alex had Sturge Weber Syndrome. Through trying to find information on the syndrome I came across Contact a Family and that is how I became involved in setting up the support group.

By age four Alex’s seizures were affecting his quality of life and his right side grew weaker. It was at that stage that hemispherectomy was mentioned. Alex was only the second child that I had heard of to have this surgery and it was a very difficult decision for us. It was made slightly easier though when we were shown his first and latest CT scans and by the confidence we had in his neurosurgeon. After surgery Alex was paralysed on his right side and couldn’t even lift his head. With the help of great physiotherapists he eventually walked again but cannot use his right hand. He also has hemianopia which we did not really understand fully until he left school and started a computer course. We always knew how it affected him on his right side; his lack of visual field was obvious. The inside of the left eye, however was not so obvious until I began helping him with his computer work. He tends to miss the beginning of words and clicks slightly in the wrong place with his mouse. He was registered partially sighted while at college so that he could get some support

After Alex’s surgery he went to a school for children with physical disabilities as he needed regular physiotherapy. While at school he developed an interest in athletics and began attending a disability sports club once a week. I became involved when the club split from the social side and we formed our own charity. I was fundraiser and then secretary for 7 years. During his time at the club Alex regularly competed nationally and once, internationally. He was selected to compete at the CP Sport World Championships in Connecticut USA. He had a great time away from us for two weeks and the experience was great for his confidence. Athletics was a fantastic way for Alex to improve his strength and stamina, especially as he didn’t get any physiotherapy once he left school Travelling to competitions across the country was a great way to meet new people and be inspired by athletes whose disability was much worse than his own. Alex has met Princess Margaret and John Major and was a mascot for Jan Molby’s testimonial at Anfield where he ‘scored’ a goal against David James and received an enormous cheer from the Kop.

Alex has many sports coaching qualifications and a gym instructor qualification and is currently trying to get a higher level of English. Maths is something he finds very difficult and has tried a number of courses with no success – yet! He is currently on a Business Administration course alongside his English and does voluntary work at Everton Football Club. He loves football and can remember games from seasons past with no difficulty – in fact, we call him Statto. He would not forgive me if I did not mention that he is a season ticket holder and passionate fan of Tranmere Rovers. He travels the country to away games with his dad, Colin and it’s a great way to vent his frustrations, and there are a great many frustrations with his team! Alex is a sensitive, thoughtful and caring young man and we are very proud of him indeed.

Mount Snowdon Walk - 3rd September 2011

2011-05-30T09:14:00.000-07:00

Sturge Weber is a rare neorological condition which my 3 year old granddaughter Olivia has.
We had never ever heard of the condition untill Olivia was born and after a complicated birth on New Years Day 2008, Olivia entered our world and from the moment we all meet her we knew we had a little fighter on our hands and fight she has done. Olivia has had to deal with an lot in such a short spate of time, in and out of hospital, she has Glucoma in both eyes, right sided weakness, full port wine stain, epilepsy, however she is an inspiation to us all and everyone who knows her will agree. Currently there are over 40 people (and counting) doing the walk up Mount Snowdon on 3rd September, its a 5 mile treck each way, so no pressure there, hey.
By donation you will be supporting a worthy cause and raising awareness. 100% of all funds raised will go directly to Sturge Weber UK.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now. http://www.justgiving.com/Jeanette-Tinsley

Bupa Great Yorkshire Run 2011

2011-05-26T01:31:00.000-07:00

We are taking part in this event on 9th October 2011 to raise awareness for Sturge Weber Syndrome, here is our story :
It all started back in 2003 when our daughter Kloise was born with a Birthmark on her scalp, face, neck and ears. This later became to light that is was a port wine stain. We were informed their was a possibility she could have laser treatment to lesson the PWS. After 6 treatments, the laser started to cause scarring so we had to cease all laser treatments until a later date. At the age of 3 after routine eye check, we were informed their was a problem with her left eye. We were sent for further tests which proved Kloise had glaucoma due to the port wine stain, and as a result wears glasses to help with her vision. She has regular quarterly check ups which include photos behind her eye, drops, pressure tests and eye tests. Kloise has eye drops in her left eye daily, to maintain the pressures in her eye. We take Kloise yearly to see the neurologist for check up and reviews after scans on her brain revealed a pool of fluid was present.
When visiting our local Health Surgery, out of 12 doctors only 1 was familiar with the Port Wine Stain, however it wasnt until we saw the neurologist that is became known Kloise did actually have the condition Sturge Weber Syndrome. We were never informed or advised of Sturge Weber Syndrome. Luckily Kloise has not suffered any seizures or learning difficulties, however this has to be monitored. Our local health surgery are still unable to answer any questions we have, and we have to be referred to other hospitals to get our answers. If we can raise awareness hopefully more health surgeries will be aware this problem exists and can help and advise future children who suffer from this condition.
Kloise is a confident young girl and does not let her on going problems affect her daily life. She has learnt to ignore the glances and comments, however she does find some of the comments upsetting, but she can also find some on the funny side.
Donating through JtGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now. http://www.justgiving.com/Marissa-Walker

Building Your Brain - Angelina Mills

2011-05-14T03:51:00.000-07:00

Angelina Mills will be featuring in a program on Thursday 19th May BBC1 9p.m . Angelina had brain surgery 12 months ago. To read more follow the link

BBC - BBC One Programmes - Inside the Human Body, Building Your Brain

Manchester Great Run

2011-05-03T07:33:00.000-07:00

Manchester Great Run
15th May 10.30 - 12.30

We are raising money and awareness for Sturge Weber Syndrome and this is why..............................

On the 28th March 2008 Mum(Nicola) and Dad(Rick) went to hospital, and our twins Alfie and Yasmin Murray were born into this world by caesarean section,they have two older brothers called Benjamin and Harvey.

Shortly after her birth we noticed that Yasmin had a red mark on the left side of her face,here is a brief story of the life so far of our precious little girl.

Sturge-Weber syndrome is a rare condition which effects about 1 in 50,000 people,in which the presence of a birthmark (port wine stain), usually on one side of the face, is associated with an abnormality of the brain caused by abnormal blood vessels on the surface of the brain. This abnormality usually results in epileptic seizure.

Shortly after Yasmins 1st birthday the seizues started which resulted in her being rushed into hospital and spent the next 7 days in high dependancy whith the doctors struggling to control the seizures.

Yasmin spent the next 4 months seizure free but the doctors warned that the seizures would come back, and they did, in September 09 they started and from then till the present day we have estimated that Yasmin has had over 20,000 seizures,and with the specialists best efforts the seizures are showing no signs of stopping,with several different types of seizures appearing, because of this Yasmin was put forward for an operation called a functional hemispherectomy,which basically means disconnecting the affected half of her brain, but as yet the specialists cannot find the focal point of the seizures,so any chance of surgery helping could be a long way off.

Richard Murray

To sponsor Richard please click on the link to go to the Just Giving page - Thank you.

http://www.justgiving.com/Richard-Murray6

New Literature

2011-04-21T04:07:00.000-07:00

Leaflet

Booklet A5

These are examples of our new literature sponsored by Dixons and LloydsTSB. The text for the booklet which also covers Klippel - Trenaunay was written by Dr. Samira Syed from Great Ormond Street Children's Hospital, London.

Poster A4

Facebook

2011-03-22T06:31:00.000-07:00

This is a group set up by Antonia East who is the administrator. Her son has Sturge Weber syndrome. The group is for anyone who wishes to have an informal online chat with people who have a connection to Sturge-Weber syndrome.

http://www.facebook.com/home.php?sk=group_161896730499476

You will need a facebook account to access the group. If you are new to this you may find the diagram below helpful.

Matthew after surgery - video

2011-03-20T07:55:00.000-07:00

Matthew's Story

2011-03-15T16:54:00.000-07:00

Dawn and Gary Macey have kindly given us permission to adapt for our site a presentation about their son Matthew Macey. At the age of two in 1997, Matthew underwent a full right-brain hemispherectomy (removal of the right side of the brain) as treatment for severe epilepsy caused by Sturge-Weber syndrome. He is now an active teenager who has achieved four GCSEs and participates in a variety of sports, college activities and interests. Despite suffering from partial use of his left side, he has represented his school at the sport boccia, is a keen swimmer, and took part in the Berkhamsted five-mile run.

READ MATTHEW'S STORY

Matthew's Story: 28

2011-03-14T18:23:00.001-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 27

2011-03-14T18:22:00.003-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 26

2011-03-14T18:22:00.001-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 25

2011-03-14T18:21:00.003-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 24

2011-03-14T18:21:00.001-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 23

2011-03-14T18:20:00.002-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 22

2011-03-14T18:20:00.000-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 21

2011-03-14T18:19:00.001-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 20

2011-03-14T18:18:00.002-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 19

2011-03-14T18:18:00.000-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28

Matthew's Story: 18

2011-03-14T18:17:00.002-07:00

PREVIOUS NEXT

01	02	03	04	05	06	07	08	09	10	11	12	13	14
15	16	17	18	19	20	21	22	23	24	25	26	27	28