C/O 88 Evenlodeway
Sandhurst
Berks
GU47 9RQ
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Stephanie W's Parents/Guardians

Jackie

Stephanie W's Siblings

Stephanie W's Interests

Story tapes, holidays/short breaks away, eating out, Harry Potter, Jacqueline Wilson, Series Of Unfortunate Events, going to concerts.

Stephanie W's Favourite Colour

N/A

Is Stephanie W able to read?

No

Is Stephanie W able to use hands?

Yes

Is Stephanie W visually/hearing impaired?

Yes

Does Stephanie W suffer from any developmental delay?

Yes

Vision and developemental delay?

Stephanie is blind and has a mental age of around 10

Favourite type of post?

Chatty letters that make her laugh

Story written 2005

Stephanie was diagnosed in may 1999 with Juvenile Battens Disease.

She was slowly going blind from the age of 5 but the specialists refused to believe us and said she was “hysterically blind”- i.e. making it up! She and our whole family were put into “therapy” resulting in six farcical months delay before parents insisted in being referred on. The diagnosis was followed quickly on seeing a specialist of rare diseases at Oxford Radcliffe Hospital and it was confirmed she was blind.

The disease is a progressive neurological genetic one and she is now wheelchair bound with a mental age of around 10 years.

Despite everything Stephanie is a happy and cheerful and enjoys every minute of her life. She is a joy.

Her life expectancy is late teens/early 20’s.

She particularly loves holidays and short breaks, eating out and playing with her young nephew. She attends a school for the blind and has many friends but rarely received mail which she loves before joining Post Pals as people don’t tend to write to blind people!

Update 30th April 2008

Stephanie had a lovely visit to Douglas House hospice in Oxford this month and enjoyed herself very much. She can't wait to go again!

Thanks for all the lovely presents, cards and letters. We do try to reply to as many as possible, but please don't be offended if we can't get to yours. 

Update 31st March 2008

Stephanie is a bit wobbly at the moment - we've increased her meds again and are hoping for the best. She now sleeps downstairs in her purpose made bedroom with princess bed covers and a super en suite shower room which makes life much easier. She's still smiling through it all.  

Despite all her own problems, Stephanie, with her colleagues from school, will be running (or in Stephanie's case being pushed around) the Race For Life course at Battersea on May 7th. 

Thanks for all our lovely Easter cards and gifts, they are much appreciated. Helen (with ME) we lost your address, silly mum threw the envelope away so we can't reply to your lovely letter…

Update 29th January 2008

We didn’t have a good start to the year as Stephanie had a seizure last Saturday and we had to call the emergency services. She recovered quite well but we have had to increase her medication and she's still a bit wobbly. Nothing gets her down for long and she didn't actually register she’d had the fit at all anyway - just demanded a huge breakfast afterwards because she was so hungry! Keep your fingers crossed that the medication keeps any further fits at bay!

Thanks again to our friend in Israel for a beautiful necklace, much admired by Stephanie's friends.

Update 3rd January 2008

We had a great Christmas and we spent New Year in Cornwall, but Steph has been ill with a urine infection and is on antibiotics again. 

Thanks to everyone who sent cards and letters. We can't possibly reply to everyone, but thank you all and we really do appreciate them.

Update 30th October 2007

Stephanie has had a fabulous half term. We went to Alton Towers with Berkshire Blind Society and had a wonderful time. We loved the rides and the scary characters for Halloween and Stephanie had a smashing break. She's had a bad cold and is on antibiotics but is getting better quickly. The new medication continues to help her mobility and awareness and she is in really good form at the moment. 

Update 30th August 2007

Stephanie has had a lovely summer holiday; we took a lovely break to Norfolk last weekend and went to the end of Pier show at Cromer which was fantastic - highly recommended! We also went on a steam train and had lovely meals out but Steph's favourite time was a trip to a jewellery shop as she loves her jewels nearly as much as her family!

All is good on the medication front; the changes seem to be helping mobility slightly.

Stephanie's now looking forward to returning to school as she loves her pals there and all the exciting events that take place - you would think it was Hogwarts! 

Stephanie also has a new nephew Charlie, born on 27th August - a week late. Stephanie made him the biggest card in the world with all her love inside!

Thank you to Helen, she's lovely! Also to our anonymous friend in Israel, who never fails to send exciting packages!

Update 30th July 2007

Summer holidays are here and Stephanie is busy with her Disability Challengers group - she was bowling today and has plans for fruit picking, BBQs (weather permitting) and days out at several nice parks. She's happy and upbeat and we are still waiting for updated medication - its taking a long time to sort out.

Update 2nd July 2007

We've just got back from Disneyland Paris which was wet but wild! All had a good time.

We have new research suggesting Stephanie needs a change of medication which may help her mobility and hopefully her speech. Please keep your fingers crossed for us.

Update 4th June 2007

Stephanie has had a lovely half term. We went to see the new Pirates movie and it had audio-description which was marvelous! Most cinemas offer this facility at selected viewings now and it makes such a difference. We also went to the Thriller spectacular at Hammersmith (a celebration of Michael Jackson and the Jackson 5's music). Stephanie wasn't really that bothered about going but at the interval said she loved it and did we have the music at home. Unfortunately it’s all on vinyl as we are so old, so we'll have to buy all the CDs to put on her MP3 player now! Then we went with Berkshire Blind Society  to London Zoo for the day. It’s nice that Stephanie is now back at school, so mum can have a rest!

Stephanie raised £468 plus tax credits for cancer research during May. She did the race for life and was pushed by her PE teacher in Battersea... but walked over the finish line... amazing!

Stephanie received some lovely story tapes received this month. Thanks to everyone.

Update 2nd May 2007

Stephanie had a wonderful day out courtesy of the Willow Foundation last Saturday. We went to London, on the Duck tour, to Hamleys shopping, went to the most wonderful production of the Sound of Music at the Paladium and finally had dinner at the Wolseley.  It was amazing!

Update 31st March 2007

We have increased Steph's tablets to take effect so she can avoid another fit. Stephanie's speech is very hard to understand and her mobility is getting very bad. Sorry, think we may be on the 'home run' with the disease - life is going to be quite difficult I think from now on!

Our friend in Israel is very good and sends something every month - Stephanie likes it very much and is very grateful. She loved her CD of love songs! Thank you - her friends at school are very jealous!

Update 8th February 2007

Stephanie has had a good January, apart from a cough, cold and earache, par for the course in the weather really! We've had a musical month, seeing Kylie and the Pussycat Dolls at Wembley which was fab. She enjoyed both concerts and Wembley Arena is really geared up for wheelchair access. We had amazing seats, if a bit noisy!

We've had lots of family get togethers this month because Stephanie's new nephew arrived on Christmas morning, so we've been showing him off and he's been meeting all the family members. 

Thanks for all your cards and wishes.

Update 5th January 2007

We went on holiday to Lanzarote on 28th December for a week and Stephanie had a lovely time splashing in the pool and eating out at some local restaurants. We also had a BBQ on New Year's Eve - not often you can do that!

Stephanie had an absolutely lovely Christmas with the best present ever - a new nephew arrived Christmas morning and she was able to go to hospital and have a cuddle after lunch.  We all had a fine time and all your lovely presents and cards made it extra special. She was very excited and thanks so much to everyone for all their thoughts and kind gifts.

Update 2nd December 2006

Stephanie is doing quite well at the moment, her walking is ok and she is stable. Stephanie loved her birthday party and looked fantastic in all her new party gear. She was unfortunately very poorly the week after with a bad cold, earache and sore throat but is better now and had a good time at school last week with another birthday cake and party with her friends there. Thanks to everyone for Stephanie's lovely cards and gifts for her birthday. She really enjoyed them all.

Update 1st November 2006

Stephanie is back at school after an interesting half term. She has bought a lovely dress and jacket for her birthday party on 18th November. We had a lovely day out at Cadbury World with our local blind society too. She's on good form and very stable at the moment. 

Update 1st October 2006

Stephanie will be 16 in November and we are holding a big party for her at a local hotel. She's really looking forward to half term as we will be shopping for a special outfit to wear (and new shoes, all girls love new shoes). She has saved up to have her hair done for the special day also.

Update 2nd September 2006

Stephanie’s granddad has been very, very poorly so we have been very busy visiting him in hospital but he’s back at home now and much better.

Update 28th May 2006

Stephanie had a lovely holiday in Florida and is missing all her lovely new friends from all over England. Half term is boring as she has post-holiday blues!

Update 28th April 2006

Stephanie is going to Florida from 29th April on a charity holiday with 11 other youngsters! I’m sure she’ll have a great time as she is very well at the moment. She was so excited this morning driving to the airport hotel where they are staying tonight.

Special thank yous to Julie and Elizabeth for all their lovely gifts and to Becky for the story tape.

Update 30th March 2006

The new drug we are trying for Parkinson type symptoms is helping Stephanie to walk a little better and makes her more flexible. Thank God!

We had a lovely holiday in Tenerife this month, following an awful flu bug which left Stephanie very weak. She still has a bad cough but is getting better each day, but she unfortunately missed two weeks at school and missed out on all the activities they organize, including a theatre trip. 

We are now on Easter holidays, so post would be most welcome as I know she will become just a bit bored!

Thanks for all your good wishes and please keep writing, it makes Stephanie’s world that much brighter! 

We’d like to thank all our friends in Myrtle Beach, America for their kind words and cards. We think it’s amazing that people in that lovely place are praying for us!

Also thanks to the anonymous person in Israel who sends lovely hand made cards.

Update 30th January 2006

Many thanks to everyone for all the very thoughtful presents. Stephanie’s received lots of lovely things and many, many cards, letters and postcards. We reply to some, but can’t possibly reply to all, so thank you and everything received is much appreciated. She is very excited when she comes home from boarding school on a Friday to open all her special things. 

We are trying a drug used for Parkinson’s disease at the moment which may help Stephanie’s mobility. We should know in a couple of weeks.