Help Kayleigh raise money for the CTT
Tax deductible
NF1 or Neurofibromatosis in its full form is a genetic skin condition that causes nerve tumours to grow where they shouldn’t. Aprroximately 1 in every 2500 people will have this condition. The most common distinguishing characteristics are the cafe au lair marks that present on the skin like birth mark.
However the conditions that quite often accompany NF1 can be quite wide and varied and the severity also varies greatly from person to person.
Children with NF1 can suffer from:
Bad organisation skills, poor motor skills which can cause problems in forming letters, writing on a line.
Immaturity
Being impulsive
Always interrupting
Difficulty in forming friendships
Being fidgety
Can appear lazy
Easily distracted
Slow to settle to a task
Dyspraxia- very accident prone
Difficulties in riding a bike
Can be forgetful
Scoliosis- curvature of the spine
ADHD
Autism
Problems with the eyes
Tumours including brain tumours both benign and malignant
Problems with speech
To name a few..
My brother Harry suffered from impulsiveness, dyspraxia, scoliosis, difference in leg length, had poor motor skills and was very impetuous and always needed to talk and would often interrupt others. But we loved him for all of his characteristics, unfortunately on the 14th October 2021 Harry suddenly and unexpectedly died. We are still awaiting official reports as to what happened and why it happened.
Harry didn't have the easiest life but lived each day so full of energy and was the best brother I could have asked for. Not only was he the best brother, he was the best uncle to my two young children.
Harry enjoyed going to days out and activities that the CTT organised and meeting people like himself.
Not only Harry but my sister Lily has a Brain Tumour which cannot be operated due to its placement. She has undergone many surgeries and went through chemotherapy. She also suffered a stroke and had to relearn how to walk. Like Harry, Lily enjoys the activities CTT organise and as a very good baker she enjoys the baking classes and the craft classes the CTT do for the children.
My step mother also has NF1, so not only am running this in memory of my darling brother, I am running it for my sister Lily, my step mother Jannine and any other person who is affected by NF1.
Thank you for reading this far and thank you for your donation. Its greatly appreciated and I can't wait to accomplish this for such a great cause.
Kayleigh xx
However the conditions that quite often accompany NF1 can be quite wide and varied and the severity also varies greatly from person to person.
Children with NF1 can suffer from:
Bad organisation skills, poor motor skills which can cause problems in forming letters, writing on a line.
Immaturity
Being impulsive
Always interrupting
Difficulty in forming friendships
Being fidgety
Can appear lazy
Easily distracted
Slow to settle to a task
Dyspraxia- very accident prone
Difficulties in riding a bike
Can be forgetful
Scoliosis- curvature of the spine
ADHD
Autism
Problems with the eyes
Tumours including brain tumours both benign and malignant
Problems with speech
To name a few..
My brother Harry suffered from impulsiveness, dyspraxia, scoliosis, difference in leg length, had poor motor skills and was very impetuous and always needed to talk and would often interrupt others. But we loved him for all of his characteristics, unfortunately on the 14th October 2021 Harry suddenly and unexpectedly died. We are still awaiting official reports as to what happened and why it happened.
Harry didn't have the easiest life but lived each day so full of energy and was the best brother I could have asked for. Not only was he the best brother, he was the best uncle to my two young children.
Harry enjoyed going to days out and activities that the CTT organised and meeting people like himself.
Not only Harry but my sister Lily has a Brain Tumour which cannot be operated due to its placement. She has undergone many surgeries and went through chemotherapy. She also suffered a stroke and had to relearn how to walk. Like Harry, Lily enjoys the activities CTT organise and as a very good baker she enjoys the baking classes and the craft classes the CTT do for the children.
My step mother also has NF1, so not only am running this in memory of my darling brother, I am running it for my sister Lily, my step mother Jannine and any other person who is affected by NF1.
Thank you for reading this far and thank you for your donation. Its greatly appreciated and I can't wait to accomplish this for such a great cause.
Kayleigh xx
Organizer
Kayleigh Jones
Organizer
England
Childhood Tumour Trust
Registered nonprofit
Donations eligible for Gift Aid.
