“Hello, I am Cheryl I am 47 and Mum to Ben who is 19, Ben has a Unique genetic condition which affects him physically and developmentally, he has a Kyphosis and scoliosis of his spine, hyper mobile joints and a play sheet of other problems, from food allergies to growth delay. We have negotiated the SEN school system and he is now studying Drama at college. I have previously set up parents groups to fight changes to SEN provision in our borough, advocated for parents at meetings and tribunals, and for several years I helped with admin for The Oakley Waterman Caravan Foundation, which provides holidays for children with life threatening illnesses. I feel I have had a taste of many of the specialities life as a Special Needs parent can throw at you, and I hope to be able to help where I can in the future as a Parent Ambassador for Strongbones! Nice to meet you all! “
“As most of you know Myles is a young person Ambassador for Strongbones which he absolutely loves. He loves sharing accessibility etc!
I am a very strong advocate for Myles in many different areas e.g funding for equipment from statutory services, Education (including home schooling) the need for changing places and accessibility are just a few.
I have also appealed and fought for home schooling for Myles. I am currently appealing Myles’ Continuing healthcare package as they want to withdraw funding for his 1-1 for education.
I would offer my help with any of the above areas and also questions re bone surgery of the spine, hips and feet as Myles has had major surgery on them all “
“My name is Laura, I am mum to Sara who is 15 and has spinabifida, hydrocephalus, scoliosis and a shopping list of associated problems. I also have 2 boys aged 10 and 13 one of which has autism and ADHD. I’m currently a mature student studying towards a mental health nursing degree. I also work at MIND charity where my role is to support mothers who have a mental health condition in their journey through parenthood”
“My name is Hayley and I am a very blessed mum to 3 children Josh 18, Ruby 9,and Holly 15. Holly was born with complex health needs and to say it was a shock to us as parents is a total understatement. Our lives changed instantly and the pathway that we thought we were heading down changed completely.
Holly ignited a passion in me that I never even knew existed. Before we were blessed with Holly, disability had never really touched our life so I didn’t really appreciate the challenges faced by a person with disabilities.
I feel totally privileged to be asked to be a parent advisor for Strongbones. I champion the ethos of such an amazing charity that is trying to break down barriers at all levels surrounding disability and really improve the quality of life for all these special children.
I work voluntary across the board with lots of organisations to promote social inclusion and better equality for all but I think what will truly help me to be the best parent advisor I can be is just being Hollys mum and using our own life experiences to make good judgements for all.
Now for the fun facts about me…..
1. I love to run
2. I love to sing on the karaoke but I’m so bad!!
3. I love to dance
4. I’m a bit of a Disney geek
5. I love all things pink and glittery
6. I love all my friends and family I’m so lucky!!
Looking forward to getting to know you all much more over the coming year.”