It has now been just under two weeks since Harriet had her MRI scan at the Queens Medical Centre in Nottingham, to establish whether Harriet`s brain was developing or getting worse, we had contacted the hospital on quite a few occasions to try and get the results, but were unable to speak to anyone .
Harriet`s Neurologist consultant at the QMC - Dr. Whitehouse had tried to call us as he was aware we were extremely anxious to find out Harriet`s results and unfortunately we missed his call, but he did send us an e-mail explaining what the results of the MRI had shown.
Dr. Whitehouse said “The brain MRI is similar to the one she had in September, when she was 4 months old. The amount of white matter in the brain looks even thinner than last time and it has hardly matured (myelinated) since then, just a little more myelin than back then, normally it would have a lot more myelination. There is still signal abnormality with patchy brightness in the thalami (the deep grey mater nucleus in the middle of the brain) like before. This looks mainly like a genetic white matter disease or leukodystrophy, but as you know we have not been able to find a unifying single diagnosis so far for her neurological condition. The spine curvature is of course visible on MRI but there is no abnormality of the bones, the curvature (kypho-scoliosis or “scoliosis”) is not due to any disease in the spine or bones, but looks like it is secondary to her abnormal tone and posture and limited neuro-development and limited movement ” .
We were obviously very upset that Harriet`s condition was getting worse and that we now knew there was no help of finding a diagnosis or treatment for Harriet within the United Kingdom.
One of the first things we did was to Google the information we had been given and found that Harriet`s white matter brain condition was not only life limiting but would also lead to a very painful and confusing death.
It was now time to act as we are Not prepared to watch Harriet`s condition deteriorate any further without exhausting every avenue possible and are now looking at other countries around the world to try and diagnose and help treat Harriet`s condition .
We are also well aware that most of these countries are Not governed by government funded health systems and that we will have to pay for any treatment Harriet has to have abroad and specialist treatment within the United Kingdom .
Harriet`s consultant neurologist Dr.Whitehouse is now well aware that we are looking for answers abroad and has said that he will assist us in any way he can, which has made a big difference to how we now look at things .
We are now looking to start raising funds for Harriet`s care, treatment and research, for home and abroad and can now confirm that a Trust has been set up and is now in place for this purpose . The Trust is called HELP HARRIET .
Over the course of the next few weeks we will be enabling the Donate button on Harriet`s website to allow people from around the world to Donate as little or a much as they can to help us Help Harriet .
We have also been approached by people that would like to raise money for Harriet and we initially had to say that until a Trust was in place that we were unable to accept any funds, but now Harriet`s Trust is in place we welcome as much help as we can get and therefore if anyone would like to raise funds through an event then we would really like to hear from you.
Mum and Dad