A Family Wish

A family wish to take Daughter to meet others with the same rare syndrome as she has to network with other families sharing stories.

 Our Daugther Abigail Jane Willis was born on the 18th September 2008, pregnacy was fine everything was normal when Abigail turned Two years old the doctors started to notice that she wasnt hitting the normal targets of a average two year old after another year of testing it took 6 professional doctors 6 hours to decide that she has a very rare sydrome called sotos sydrome. Sotos sydrome is very very rare it effects 2 out of 42,000 children in the UK, Nearly every person even our GP or Hospital staff we speak to even now 5 years after her diagnosis dont know about this sydrome please check out the link below for further information on Sotos.

What is Sotos Syndrome

Myself & Terri feel like we are banging our head agaisnt a brick wall & have lost count on the amount of times that we have had to explain to situation from schools, Hospitals, etc. We have been looking on the internet, books everything and we have found that there is no where in the uk that does support groups, meet and greet etc, so we have no networks between others that we can speak / share information and storys with we are feeling so alone The only place that has this is America as they have there own association who meet every year we have tried to save before but keep missing the target. This year its in Portland, Oregon USA, we would love to take Abigail out there & for her to meet other children who are in the same situation. At the conference you get  A chance to Learn, Network,and Bond, You get medical information directly from the experts, a Free private consultation from an expert such as Dr. G. Bradley Schaefer who is a leader in the sotos field & many workshops for the adults, which with this new knowledge we plan to bring it back to the UK and to set up a website to aid other family's who are in the same situation, Please find the full conference Overview below:

Conference Overview

This would be a trip of a lifetime as now she is seven years old and we have been going round in circles for that time, It would be a learning expirence for us all,  Abigail is a fantastic child who is loved by everone in her school she is the sweetest child you will ever meet. She is our world. 

 

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