My name is Brynn and this year I am turning 18. With this in mind I have set myself another incredible and gruelling challenge to push, pull, or propel myself 2000 miles using my wheelchair or other adapted/non-adapted self-propelled equipment.

I live in Shetland and I am a wheelchair user due to fixed ankle contractures. I am also autistic, have ADHD and severe asthma. I aim to go above and beyond, pushing my own body's limit to the max to help Just4Children help my friends and next door neighbours: Zak and Summer.

Zak and Summer are two incredible children who need access to services such as CK Intensives and respite to particular facilities that are familiar with their conditions in order to flourish and grow as they should. My goal is to help them to reach their full potential, just as others have helped me!

Just4Children are an incredible charity who helped me 4 years ago to raise funds for my active wheelchair. They are helping so many children access therapy and equipment that they otherwise couldn’t afford. I am delighted to be raising funds again for them so they can help my friends.

The amount that we are trying to raise for Zak and Summer at the moment is £20,000, but this is just the start of their journey and they will require a lot more for them to continue to receive the therapy they both desperately need.

Why Zak and Summer?

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.

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 including 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 transpired 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's unique physiology has resulted in dozens of surgeries over the past seven years. The particular anatomy of her stomach means it is unable to drain and empty food into the bowel. Summer therefore has two feeding tubes, one from her stomach - a gastrostomy, and one from her bowel - jejunostomy. The condition also means she persistently vomits, struggles to gain weight and always requires one on one support with every aspect of her life.

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. 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, while 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. Zak's form of epilepsy is drug resistant so there is no way of controlling his seizures with medication; 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 to 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 and drink certain foods and fluids as they could cause him to choke. It also means that Zak had very delayed speech and used sign language for the most of his early years until he started making improvements.

Despite the complexities of their conditions, there are therapies that the kids would benefit from. For example, therapy from CK Intensives that specialises in neuromuscular strength and conditioning has proven to be a massive benefit to Summer's physical health. After only a week it helped Summer to progress with weight-bearing through her legs and learning coordination through her arms. However, the cost of both the therapy itself, and the cost of accommodation is, unfortunately, unaffordable, so regular blocks of therapy are unobtainable.

Zak and Summer would also benefit from private physiotherapy to manage the physical pain they endure daily and access to a variety of specialist equipment, such as a Theraplate, a therapy bench, I-Joy Ride and an electric horse riding machine, to support their muscular development and circulation. Again, the cost of accessing facilities with such equipment is prohibitive.

With the help of Just4Children I hope to correct this by raising funds to get these children the services they so desperately need.

Thank you for your support.