Lexi Morgan Hailstone
..Look Out For Lexi..
Trust Fund
Hello my name is Lexi; I was born on 31st December 2007. I have a rare Chromosome Disorder, which means I may never walk or talk, it is called 1p36 deletion Syndrome.
It is very difficult to explain but I have developmental delay so I am not able to do things that a typical child my age can do. On top of this I also have weak muscles, a severe hearing loss, vision problems, epilepsy and bowel problems.
Before I turned one year old I used to eat and drink just like you. Since then I don’t know what happened to me but I can no longer eat or drink anything by mouth. I have to be fed through a tube into my tummy. My mummy and daddy have tried very hard for 4 years to encourage me to eat and drink. They have even raised £15,000 to take me to a special clinic in Austria where over 3 weeks, the doctors taught me to eat again by giving me physical and psychological therapy. When I came home I got very unwell and my doctors here told me it was unsafe for me to eat and to stop everything by mouth. I am going to have a rest from food for a while until I am older and stronger and hopefully I can do it then.
I have attended a special centre in Oxford called Footsteps. This provided me with private intense physiotherapy over a course of 3 weeks. They gave me ground-breaking physiotherapy, where specialized physiotherapists designed specific rehabilitation, therapeutic exercises and specialized equipment, to help me achieve my full potential. I am so thankful for everyone who supported me when I fundraised for this. My life changed dramatically from this therapy – It taught me to sit up, get into crawling position, bum shuffle and even stand with support. The last session I had in August 2014 was extremely difficult for me and I could just not cope with the pressure I am much stronger now so I fought and fought the therapists which was very upsetting for me and my family. We have decided to give it another go in a year or two.
We are currently fundraising to provide for my future care and any specialist therapies or equipment I may need that cannot be funded by the NHS. My family are looking into Private physiotherapy and Speech Therapy that I can have at home.
If you would like to help fundraise, make a donation to my fund, or anything at all please contact us.
Thank you
Lexi x x