My name is Donna Burgoyne and my partners name is Adrian Watt and we’re from the u.k and this is the story of our daughter Dallas and our family. Dallas is our second child we also have another daughter named Charlotte who is fourteen.When I became pregnant it was a bit of a shock as there was going to be a big age difference between Charlotte and Dallas but we were all pleased.My pregnancy went well with no complications as did the birth with NO pain relief and Dallas was perfect.When she was ten weeks old she had her first immunisation and was a little unwell,a few days later her eyes started flickering and one side of her body began jerking ,I knew something was very wrong.We took Dallas to our doctor and he sent us to hospital for tests,they performed an EEG and a MRI scan, at this stage ew both thought the way the doctors were speaking [epilepsy].When the consultant paediatrician came to see us nothing could prepare us for the diagnosis of our child.I can still remember the doctors face when she told us Dallas corpus collosum was missing and that other parts of her brain were affected, we were distraught not so much for us but our beautiful baby.
After the initial shock we wanted some questions answered HOW , WHY has this happened and do you know they didnt even know the name of her condition as it is so rare. Once at home the reality hit us , we needed to know what was wrong with her and how she was going to develop thats when we asked to be refered to Great Ormand Street Hospital in London for children. Professer Neville was to see us on the 12 November 2000 Dallas was by now 9 months old ,he looked her over checking everything and another doctor checked her eyes. After looking at her brain scans he confirmed Aicardi Syndrome. I began looking on the internet to find out as much information as I could as the doctors could not say how she would progress . We were upset to think she would never walk or talk AND have an epilepsy syndrome that has been hard to control, this is the worst thing to see your child having these clusters of seizures everyday its heartbreaking. You have to carry on as this going to be part of everyday life for Dallas and the whole family.
Medications, we have tried a lot Tegratol,this stopped Dallas from smiling Clonezapam,Sodium Valporate,Topiramate . Dallas is now taking Vigabatrin this seems to work to a point but is still having daily seizures, but we are now going to start a new drug Levectiracem together with Vigabatrin fingers crossed. Dallas is nearly three now and is so beautiful , she can roll side to side and nearly sits up when SHE wants to, can stand aided for a minute, says da da,mmm [mama]. Dallas lves people probably more than toys but she does like lights and loud noises and smiles alot. Dallas seems to have good eyesight but does tend to prefer looking to her left and using the right hand side of her body[arms and legs] .Dallas now attends a special school only ine day a week which she enjoys and it gives me a break. We all love Dallas she has brought so much light into our lives and is treated like a queen in our home. Adrian Dallas daddy spoils her rotten and she seems to respond to him alot, he baths her every night and puts her to bed he has so much patience with her. Charlotte our other daughter loves Dallas alot but seems to be more interested in her friends at the moment, I think its the age thing [TEENAGER] .We ve come to realise us having Dallas was meant to be, Maybe because we can give her a good life, cope with all the pressures and love her to bits. We wouldn’t swap her for the world.