My name is Nick and my wife is called Susan and we are the very proud parents of our wonderful 4 year old daughter Katerina. We had to wait 10 long years to become parents and when it finally happened it was the most amazing gift we could ever have wished for. Despite a very difficult pregnancy and a premature delivery Kat was born small but healthy. However it wasn’t long before we started to realise that she wasn’t developing normally and meeting the expected milestones.
It’s painful to have to accept that your precious child is anything but perfect, but our acute awareness of Kat’s issues and the alarm bells it raised were in the main due to our professional backgrounds. I have worked for many years as a child care development worker in schools for children with additional needs and Susan works in healthcare in role that involves working with children and young people who present with a wide range of physical and intellectual disability. Our combined experience ultimately drove us to seek an early diagnosis as we are very aware of the need for early intervention. Katerina received the diagnosis of Full Mutation Fragile X syndrome when she was just 2 years old, and later autism in August 2017.
Fragile X is a genetic disorder that is the most common identifiable cause of intellectual disability. It affects approximately 1 in 8,000 girls. It can cause a wide range of learning, emotional and behavioural challenges along with a variety of physical characteristics.
Medical science is now clear as to what causes Fragile X, and there is a lot of very promising clinical research being carried out across the world which is aiming towards potentially effective treatments and/or a cure.
Shortly after Katerina’s diagnosis we got in touch with one of the international leading specialists in the field of neurodevelopmental disorders, and decided to take the huge step of travelling out to California in order that our daughter could be assessed by her.
In order for Katerina to have access to the therapy and treatment she needs, we made the decision to travel back to California for a period of 2 months as there has not been enough progress in the U.K to meet Katerina's needs. Also the strong consensus across the board is that early intervention is essential in order to give Katerina the best chance in life.
Unfortunately, this became a very costly endeavour, and therefore we created the Gofundme page originally, in order to ask for financial support from anyone willing or able to assist us. I also linked to a video I created for the fans of my beloved football team I support. This enabled us to pay for all the hospital, therapy bills whilst there.
Our trip to California was a success as we learnt so much about Katerina’s condition and the therapies and treatment options that could significantly help her. We were prescribed medication that would not only increase her cognitive development, but also help dampen her high anxiety and reduce her attention deficit disorder; debilitating symptoms of her condition that prevent Katerina from socialising with other children and generally suppressing her all round development.
Sadly we quickly realised once back home that due to the lack knowledge of the condition and lack of resources for additional needs therapies in the UK, we were unable to continue the great work we started in the States. We also couldn’t continue with the medication prescribed in the States to increase Katerina’s cognitive abilities and reduce her high stress levels, as the medical community here refuse to monitor and administer any such medications given to minors; this meant we could not take the risk of administering drugs to her without it being overseen by medical professionals on a regular basis.
The lack of resources here mean she gets little or no input from professionals. I therefore had to take the decision to drastically reduce my hours of work in order to be a carer for Katerina and give her as much assistance in her development as I can. This has obviously been a strain financially, but we strongly believe that the benefit to Katerina having me assist her development on a more regular basis was worth the financial drawback.
My background and experience working with children in special education schools means I can assist her learning with real knowledge, understanding and effectiveness. I am also a musician and songwriter and use these skills to enhance her learning experiences – Katerina loves music and not a day goes by where I’m not using the guitar to help educate her and bring a calmness and a positive vibe to her general well being. I produce a You Tube channel called ‘Bubble Education’, which provides free original songs and animations to children all around the world, helping educators facilitate their learning environments with my songs too. A lot of these songs I originally write for Katerina to assist her learning in a fun and enjoyable way, but it is great to know that so many other children are benefiting from my educational music too. https://www.youtube.com/channel/UC0vkuTbRI4jllr-vYbF7ohw
Unfortunately in the summer, Katerina had a prolonged seizure which hospitalised her. Thankfully she pulled through it without any long lasting damage, however, we now live with the worry of further seizures and concern that she has epilepsy. This is obviously now another huge consideration when it comes to getting her the right treatments.
We are very passionate in doing the very best we can for our daughter, and will go to any lengths to do so. We have come to the decision that this would involve moving to California for at least a year and obtaining the best medical treatment and therapies for her. To do this, we recognise it would take a large sum of money to afford the medical bills and living expenses, but we are determined make this a reality for our daughter as it would give her the very best opportunity to develop to her full potential.
We are therefore kindly asking for any donations, no matter how small, in order for us to make our dream for Katerina’s future a reality.
If you require any further information please do not hesitate to get in contact with us.
Thank you for taking the time to read our story.
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