C/O 8 Field Terrace
Phillipstown
New Tredegar
Gwent
NP24 6BS
United Kingdom

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

Email Pal

Courtenay P's Parents/Guardians

Sharon and Andrew

Courtenay P's Siblings

Chelsea, Cameron, Tyanna

Courtenay P's Interests

Football and supports Liverpool FC, Scouts, reading, writing letters, making new friends, watching WWE on TV and playing on her DS

Courtenay P's Favourite Colour

Red

Is Courtenay P able to read?

Yes

Is Courtenay P able to use hands?

Yes

Is Courtenay P visually/hearing impaired?

No

Does Courtenay P suffer from any developmental delay?

No

Story written 2008

Courtenay was born on the 3rd October 1999. From the age of around 2 months, I noticed that her head was to one side. I asked the GP at her baby clinic and he told me that there was no need to worry, it was just a lack of head control, and at the time I accepted this. When she reached the age of one year her head was still to the one side and she was sleeping less and less. Her behaviour was also getting worse. She had brown patches but I didn't think anything of it because I had them and so did her 2 other sisters and my Mum. I revisited my GP and insisted on a referral to the hospital, the paediatrician there put her problem down to glue ear and said she was purposely putting her head to the side because she was shy Courtenay is anything but shy!

I left it at this though deep down I knew there was something wrong and I didn't know what. For the next 3 years it was the same. I was wary of going back to my GP because he said i was an over protective mother due to my other children also having problems at the time. Then in December 2003 I was taken into hospital doubled over in severe pain at first and I was thought to have appendicitis. The doctors did an ultrasound scan followed by a CT scan. They found a big tumour attached to my pelvis, spine and travelling down my right leg. It was thought to be malignant and I was transferred to the Royal Marsden hospital in London. There I was diagnosed with Neurofibromatosis.

This set the ball rolling and everything started to slot into place. The whole family were referred to a geneticist and tested for NF1. Courtenay and her 2 sisters were also diagnosed with NF. It was such a relief to find out that I was not going mad and the children’s problems were not all in my head. First Courtenay's oldest sister was late sitting, walking, and had problems feeding. She was very underweight and small for her age. She also had lots of cafe-au-late spots, but they were overlooked. I was told I was worrying about nothing and it was normal for first time mums. Secondly, Courtenay’s behaviour was put down partly to our parenting and her neck was over looked. Armed with new knowledge, I visited her (thankfully new) GP. He took me seriously and suspected scoliosis and organised X-rays which confirmed this. Her spine is S shaped and her hips are lopsided causing her head tilt. Since then everything has gotten better for us and we have more support from doctors etc. Courtenay tries not to let this restrict her when playing football, but she is not able to play for longer than 10 minutes due to the pain. Her doctors allow her to play football but she has to take it easy, no saving goals etc. Courtenay will probably have her brace next year, even sooner if it progresses.

Regarding Courtenay’s younger sister Tyanna, luckily after my diagnosis she had support from the start. She has developmental delay and attends a main stream school with one to one support.

Having 3 other siblings with special needs and also having problems myself, it takes its toll on Courtenay and her behaviour can be challenging. She can be aggressive to her siblings but is always very remorseful because she often does it on impulse without thinking. She often comes home from school upset because she so often has to play alone at break times. Courtenay is a loveable, chatty and very funny little girl and would love to make new friends to exchange letters with. She is always writing me letters and posting them under my bedroom door.