Hello, my name is Kaid and I am almost 5 years old. When I was 8 months old my mummy was worried because I couldn’t do the things that babies my age could, sit up, crawl, or even hold my head up well. The doctors ran some tests and mummy was told that I have two rare chromosome disorders. They are called 18q23 Deletion Syndrome and 22q13 Duplication Syndrome. These cause me to have Global Development Delay, meaning I am developmentally delayed in all areas and always will be. At 5 years old, I am currently developmentally that of an 18 month old. I am still unable to walk and my communication is limited.
I also have absence/vacancy seizures and myoclonic spasms in my muscles. These spasms cause me to wake all through the night and never get into the deep realm of sleep. This effects me in many ways too as I am not getting a good nights sleep. Along with this I am also severely deaf in my left ear and partially deaf in my right ear. I wear special boots which are called AFO’s with SMO’s inside of them, which help to straighten my legs and turn my feet the right way. They are a big help when I’m in my special standing frame or trying to practice in my walker or when I’m standing up to the furniture, which I have just started to do recently!!
In late 2012, I was put to sleep while they did an MRI. After this, mummy was told that I have a degenerative neurological disorder called Pelizaeus Merzbacher Disease, which is a Leukodystrophy. This means that my brain has very little Myelin, which is supposed to help all of the messages go from the brain to the parts of my body. Basically a lot of my messages take a very long time to get where they’re going and sometimes they are lost altogether.
Most recently my behavior has changed a lot, and this has both my mummy and specialists worried because I have always been a very happy, placid child, never upset and never cross. Now though, I find myself getting very angry and lashing out at those around me for no reason, or no reason I can communicate! I have terrible mood swings that my pediatrician calls manic, meaning I am hyperactive to the fullest extent one moment and at any moment will suddenly be very upset, quiet or vacant. Even if I knew why I do this, I am unable to communicate to tell anyone
My mummy has had to take me to see my pediatrician privately ad he wants us to urgently start seeing a private pediatric neurologist as well as a private pediatric psychiatrist. He wants to make sure I’m not having any other forms of seizure activity on top of what I already have, as well as find out if I maybe do have some type of manic disorder ie. bipolar disorder, schizophrenia or something similar.
My mummy’s work is taking care of me, so she is unable to afford all of these private doctors but she knows I need them so she will do whatever it takes to make sure I do! We are trying to fundraise to assist in covering the costs of these appointments and medications which I will be required to take as its all going to add up very quickly.
We would really appreciate any donations that would help us, large or small we know every single dollar helps & will make a huge difference in our lives.
I also have my very own Facebook page where mummy shares photos of me, my progress and my journey with rare disease, I would love it if you came to say hello. It is called Kaid’s Krusaide. Mummy is currently trying to get an online auction going on my Facebook page too, so if anyone would prefer to help out in that way, rather than money, we really need items and/or services/vouchers etc that we could auction off, big or small it all helps! Mummy welcomes any questions you might have, so please email her if you have any at firstname.lastname@example.org
Many hugs and thanks, Kaid (and mummy of course, Samara Newland)
To Donate to Kaid Nutton, please use the form below. Thank you for your generosity.
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