C/O 16 Pleasant Road,
Penygraig,
RCT,
CF40 1EE
United Kingdom

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

Email Pal

Niamh W's Parents/Guardians

Suzanne

Niamh W's Siblings

Kiera 14/09/1997 likes bratz, doctor who, reading all books, make up and girly stuff

Niamh W's Interests

Listening to and watching tv, swimming, painting, sticking glue glitter and messy craft stuff, dancing, dressing up

Niamh W's Favourite Colour

Pink

Is Niamh W able to read?

No

Is Niamh W able to use hands?

Yes

Is Niamh W visually/hearing impaired?

Yes

Does Niamh W suffer from any developmental delay?

No

Vision problems?

Niamh is registered blind but has some useful partial sight in one eye. She is learning Braille and enjoys touch and feel tactile books or Braille books.

Story written 2007

Niamh has had various health problems since early childhood. She was born with a condition known as CHOANAL ATRESIA which meant that at birth she was unable to breathe through her nose. This meant that at one day old she needed surgery to help her breathe. Over the next 3 and a half years she had 9 more operations on her nose and was eventually able to breathe through it.

At that time we thought that Niamh had had her share of health problems. However in November 2005 when she was aged 5, she woke up one morning completely blind. We spent several weeks in hospital where they diagnosed a type of optic neuritis that basically means inflammation of the optic nerves. At the same time they also found a type of brain tumour called a PINEAL GLAND TUMOUR. This was monitored by the doctors and isn’t requiring treatment at present. They were unsure if this was connected to the vision loss.

Niamh returned to mainstream school and started learning Braille in January 2006 and has coped well with her problems. Her eyesight did begin to improve but in May 2006 she had a second attack of OPTIC NUERITIS.

In August 2006 she suddenly developed paralysis of her lower limbs and was readmitted to hospital. The doctors then linked her vision problems with this paralysis and diagnosed a very rare type of MS known as DEVICS DISEASE. Her condition has gradually improved after a relapse and further paralysis in October. She has made good progress; she is back at school and fully mobile again. She is on a cocktail of drugs to keep her condition under control including steroids and immunosuppressants. She has regular check ups and fortnightly blood tests (for which she is really brave.)

It has been a very scary few months for us but she has coped so well and adapted to everything. She truly is a little star and an inspiration to us all.

Update 9th April 2008

Niamh has had a very good few months and she has finally stopped her steroids this month. This will be the real test to see if she remains relapse free without steroids and only her immunosuppressants, so please keep everything crossed for her.

We are also planning to revisit Florida in early May as the girls enjoyed it all so much last year.

Thank you for all the post.

Update 5th January 2008

Niamh had a wonderful Christmas and really enjoyed getting her posties along with her sister Kiera. It really meant a lot to them both to receive all the wonderful gifts and cards from their Post Pal friends. We had an early Christmas where they opened their Post Pal gifts on Christmas Eve, which they thought was wonderful. Niamh was very impressed with the cards she received from Rudolph and his friends.

Niamh has made really good progress this past year, much better than we could ever have hoped for. She continues to take immunosuppressants and is on a low dose of steroids. She is growing very slowly and we are trying to encourage her to gain weight, although her appetite is poor. We are hoping to stop the steroids in another 10 weeks, fingers crossed.

She will be in hospital this week for a day and needs to have a needle in her hand for a few hours for tests to make sure her body hasn't got dependent on the steroids. So we are hoping that will go well.

Wishing everyone a happy and healthy New Year and thank you all again for your kindness. Special thanks to Wendy, Andrew, George and Anna Pettifer from Australia, Despina from the USA, Maria and Michael, Jenny, Helen, Jenn, Martin, Jackie and Jamie, Laura H, Ruth and also Craig and Abby for their lovely presents. More thanks to Julie Barrat and family (Niamh loved the seal) Maria Carney, Emma Hoole and Helen Brierley.

Update 15th December 2007

Niamh is very excited about Christmas and can’t wait for all her post pals cards and gifts as we are saving them up for her. Thanks to everyone xxx

Update 5th November 2007

Niamh is doing really well and looking forward to Christmas arriving. She is already making her list for Santa. She loves getting her posties, so keep up the good work!

Update 11th September 2007

Niamh is still doing well and looks forward to school in September. She is also looking forward to her and her big sisters birthday, which they share on September 14th.

Thank you all for your cards and smiles.

Update 1st August 2007

Thanks again for all our lovely post pals gifts, love Kiera and Niamh.

Update 5th July 2007

Niamh continues to do well. Her recent MRI scan was stable and she is weaning down her steroids. She is looking forward to her school holidays as well. Thanks to all our post pals.

Update 6th June 2007

Niamh has had a wonderful month after her holiday in Florida. Niamh has been really good with yet more tests and investigations at the hospital. June 14th she is to have an MRI scan to check the pineal gland tumour and the areas on her spine caused by devics. She will be in hospital for a day for this. Wish us luck please.

Thanks to everyone, especially Kat, for all Niamh’s post and the wonderful mystery gift for her sister Kiera.

Update 20th May 2007

Niamh had a fabulous holiday in Florida Disney World. It was a well earned rest for us all. We met all the princesses and had breakfast with them. We also went swimming with dolphins which Niamh loved.

We have a consultant review next week which will probably involve a change in medication and a few more tests for Niamh. We also have a CT scan booked for 14th June so think of us then. She has to have a general anaesthetic for that. We have lost count now of how many times she has been put to sleep (at least 15) and she’s always so good.

Thanks Julie and Mari for remembering us again and to all our overseas posties.

Update 11th April 2007

Niamh has had a good month and is looking forward to her visit to disney world on the 29th of April. Her vision seems stable and pretty good at the moment. She is learning everyday to make better use of her vision and amazes us daily with her abilities. We have an appointment tomorrow with a Professor from Great Ormond Street who is visiting Wales and is reviewing Niamh’s case. We also have a check up with the ophthalmologist this week.

Thank you to Julie and Mari for your lovely cards and thank you so much to Corrine for the fabulous gifts from the USA, the girls loved them.

Update 1st March 2007

Niamh is doing well at the moment; she has loved getting her post. She is going on holiday in April to Disney Land Florida.