Zak and Summer need access to services such as CK Intensives and respite to certain facilities that are familiar with their conditions to flourish and grow as they should.
The lives of Zakary and Summer in the Shetland Isles are complicated and challenging due to the disabilities they were born with. Their complexities have hindered their development. Their stories are below.
Zak is aged 16. He was born six weeks premature in 2006. From a young age, he struggled to reach milestones and had general ill health throughout his early years. Five years later, in 2011, Zak was diagnosed with a rare brain malformation, which was a neuronal migration disorder called polymicrogyria. A neuronal migration disorder develops before birth, whilst the brain is still developing, and is caused by nerve cells being unable to migrate to the appropriate area of the brain. A partnering factor of polymicrogyria is epilepsy.
Zak started having seizures when he was 10 years old. The form of Zak’s epilepsy is drug resistant, so there is no way of controlling his seizures with medication, and he has had trials with every medication available to him, but none proved successful. Zak tends to have seizures every day, with the odd day where he has none. Zak has also been diagnosed with Functional Neurologic Disorder (FND) where he has seizures that are non-epileptic, which present themselves differently than epileptic seizures. He also struggles with Worster Drought syndrome, which is a form of cerebral palsy that affects the muscles of the throat and mouth. As a result of this, Zak struggles to eat certain foods or drink certain fluids as it could cause him to choke. It also means Zak had very delayed speech and used sign language for the most of his early years until he started making improvements.
Summer is aged 7. She was born in May 2015, but only got discharged from hospital six months after she was born. She had many physical complications following her birth which include a neuronal migration disorder and a brain condition called periventricular leukomalacia, which has caused Summer to be partially sighted. Along with this diagnosis, it also came to light that she had Arthrogryposis Multiplex congenita (AMC) which affects her joints, bones and muscles. The knock-on effect of this is that Summer is unable to lift her arms or stand by herself, meaning she is being held back in her development. She also has a locked jaw due to AMC and scoliosis in her spine.
Summer has had dozens of surgeries over the past seven years, due to her own extremely unique physiology. Summer has two feeding tubes, one from her stomach, a gastrostomy, and one from her bowel, a jejunostomy. Summer has these tubes due to the anatomy of her stomach, as her stomach is unable to drain and empty food through into the bowel which also means she persistently vomits and struggles to gain weight. Summer always requires one on one support with every aspect of her life.
There are a multitude of opportunities that the kids would benefit from. One of the important activities which is a massive benefit to Summer’s physical health is therapy from CK Intensives. This type of therapy is specialist neuromuscular strength and conditioning, which after only a week, proved to help Summer to progress with weight baring through her legs and learning coordination through her arms. The cost of not only the therapy itself, but also the cost of accommodation is unfortunately unaffordable, so regular blocks of therapy would be unrealistic to afford.
The goal is also hopefully give Zak and Summer access to private physiotherapy as they both are in a lot of physical pain.
There is also a multitude of different types of equipment that would benefit both Zak and Summer, including a TheraPlate, a therapy bench, I-Joy Ride and an electric horse-riding machine.
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