PLEASE HELP ME TO WALK AND TALK
Donation protected
Hello everyone,
I am Meghan, 20 months old and I was born without oxygen. Some of you know me already but for those who don't, here is my story.
At birth, it took a while for me to react to resuscitation which resulted in a diagnosis of stage 2 Hypoxic Ischemic Encephalopathy (HIE). In simple words, I have been living my life with a brain injury. During my first month, I stayed at the emergency (NICU) department on life support. I fought through that battle and now I am going to ask you to fight with me.
What does my brain injury mean? This type of injuries can lead to several further diagnoses, from different types of epilepsy to cerebral palsy and more. Unfortunately, I have 3 different types of epilepsy with the worst one being infantile spasms. This particular one completely shuts your development and communication in your brain. It took me 10 months in the hospital with tones of medications to try and fail before we find the one thing that controlled it, Ketogenic diet. I gained full control of my seizures a few months ago and have been, thankfully, hospital free since. It is nice not having tubes hanging out of me, to say the least. I mentioned cerebral palsy (CP)... yes I was diagnosed with that too but to be honest it comes as a package, you can have one and not the other. CP is a permanent movement disorder which by different therapies can be improved.
How does my brain work at the moment? Just imagine a bunch of electricity cables wrongly connected with some faulty cables amongst it trying to connect and just sparks away. Nevertheless, now that my epilepsy is controlled, it is time to rewire my brain, meaning that part of my brain cells are dead but whatever left, we can still connect them to bring the best out of me and reach my full potential as I am hoping to be self-sufficient like a normal human being.
At the moment, I can't sit, crawl, walk or even hold my head let alone a toy. I am either laying on my back or front all day as I can't move due to my muscle tone. For my feedings, I am strapped to a special needs chair and for my blood circulation to flow and my hips to stay in place, I am strapped to a standing frame. I rely on everyone around me to do the basics, to eat and drink. This has a huge impact on our family life too as my mom has to take care of me full time. I could go to the nursery with my age but they don't accept me due to my condition as it would require to have 1 nurse only for me which the state cant provide us with. Kids at my age are running up and down being naughty and making a mess. I would like to do just that but I need some help.
The human brain forms by the age of 2-3 so I don't have much time left to connect the nerve system and bring the most out of my situation and my brain function. This is my last chance and the time is ticking, sadly, not in my favour at the moment. Here is where I need your help as these intensive neuro facilitation therapies cost an arm and a leg with special needs equipment that comes with it. Please support me to enable me to learn to complete my basic needs by myself. Thank you.
I am Meghan, 20 months old and I was born without oxygen. Some of you know me already but for those who don't, here is my story.
At birth, it took a while for me to react to resuscitation which resulted in a diagnosis of stage 2 Hypoxic Ischemic Encephalopathy (HIE). In simple words, I have been living my life with a brain injury. During my first month, I stayed at the emergency (NICU) department on life support. I fought through that battle and now I am going to ask you to fight with me.
What does my brain injury mean? This type of injuries can lead to several further diagnoses, from different types of epilepsy to cerebral palsy and more. Unfortunately, I have 3 different types of epilepsy with the worst one being infantile spasms. This particular one completely shuts your development and communication in your brain. It took me 10 months in the hospital with tones of medications to try and fail before we find the one thing that controlled it, Ketogenic diet. I gained full control of my seizures a few months ago and have been, thankfully, hospital free since. It is nice not having tubes hanging out of me, to say the least. I mentioned cerebral palsy (CP)... yes I was diagnosed with that too but to be honest it comes as a package, you can have one and not the other. CP is a permanent movement disorder which by different therapies can be improved.
How does my brain work at the moment? Just imagine a bunch of electricity cables wrongly connected with some faulty cables amongst it trying to connect and just sparks away. Nevertheless, now that my epilepsy is controlled, it is time to rewire my brain, meaning that part of my brain cells are dead but whatever left, we can still connect them to bring the best out of me and reach my full potential as I am hoping to be self-sufficient like a normal human being.
At the moment, I can't sit, crawl, walk or even hold my head let alone a toy. I am either laying on my back or front all day as I can't move due to my muscle tone. For my feedings, I am strapped to a special needs chair and for my blood circulation to flow and my hips to stay in place, I am strapped to a standing frame. I rely on everyone around me to do the basics, to eat and drink. This has a huge impact on our family life too as my mom has to take care of me full time. I could go to the nursery with my age but they don't accept me due to my condition as it would require to have 1 nurse only for me which the state cant provide us with. Kids at my age are running up and down being naughty and making a mess. I would like to do just that but I need some help.
The human brain forms by the age of 2-3 so I don't have much time left to connect the nerve system and bring the most out of my situation and my brain function. This is my last chance and the time is ticking, sadly, not in my favour at the moment. Here is where I need your help as these intensive neuro facilitation therapies cost an arm and a leg with special needs equipment that comes with it. Please support me to enable me to learn to complete my basic needs by myself. Thank you.
Organiser and beneficiary
SZANDRA SZOGEDI
Organiser
England
DWAYNE BARNETT
Beneficiary