My name is Ethan and I am nine years old. I have a twin sister called Freya who is a whole two minutes older. I am going to walk three miles along the canal from Bradford on Avon to help raise money for other special children like me so that their families can get lots of support from SWAN UK (syndromes without a name).
I spent the first eight weeks of my life in a neonatal intensive care unit (NICU) as Freya and I were born 10 weeks early. By the time I was five I’d had had two hernia operations, been diagnosed with Global Developmental Delay, Epilepsy, Hypotonia and had had lots of tests including MRIs, blood tests, physiotherapy, occupational therapy and lots of support from clever doctors and therapists.
Fast forward to March 2017 and I saw a geneticist (who was the cleverest person I have ever met) who told my mummy and daddy that I have an undiagnosed genetic condition. This means that I have to have lots more tests to find out why I am so special.
We were told about this amazing support network called SWAN UK who have helped so much by putting my family in touch with other families who have children with undiagnosed genetic conditions.
I know mummy and daddy worry about me as I have lots of medical problems and as we do not know why I have them there are no medicines I can take to help me, but SWAN UK has helped to ease this.
Sadly it can take many years for families to get answers, and that is if we are lucky.
SWAN UK cannot give answers to the questions that we have but they do make my parents feel as if they are not alone and they are able to talk with other families for support. SWAN UK even sent me balloons when I was poorly a few weeks ago and had to go to hospital.
This amazing network needs all the help it can get so it can support other families with SWAN children, so I have decided to walk three miles along the Avon and Kennett Canal from Bradford on Avon on Sunday 27 August 2017 to raise as much money as possible. I would love to raise £300 which means for every one mile I walk I would raise £100!
Please please help support me and help other children like me.
Love Ethan xx