A fundraising campaign has been set up to help the lives of two Shetland siblings who suffer from multiple disabilities and challenges.
Zak and Summer Carr, from Gott, need access to services and facilities that are familiar with their conditions to help them flourish and grow.
A fundraiser has been set up by the charity Just4Children.
16-year-old Zak and his seven-year-old sister, Summer, were both born with disabilities described as “complicated and challenging”.
The charity said both children had developmental delay.
In a post on JustGiving the charity wrote: “Zak was born six weeks prematurely in 2006 and from a young age struggled to reach milestones, while also suffered with general ill health during his early years.
“In 2011, he was diagnosed with a rare brain malformation, a neuronal migration disorder called polymicrogyria, which develops before birth and is caused by nerve cells being unable to migrate to the appropriate area of the brain.
No drug to control Zak’s epilepsy
“A result of polymicrogyria is epilepsy and Zak started having seizures when he was aged 10, however, due to his epilepsy being drug resistant, there is no way of controlling them with medication.
“Despite having trials of various types of medication, none have proved successful and as well as this, he has also been diagnosed with functional neurological disorder, where he has seizures that are non-epileptic.”
The youngster also has Worster-Drought syndrome, a form of cerebral palsy that affects the muscles of the throat and mouth, as a result, Zak struggles to eat certain foods and drink, with certain fluids causing him to choke.
The charity continued: “Due to this, he had very delayed speech and used sign language for the most of his early years until he started making improvements.”
His sister, Summer, who was born in 2015, stayed in hospital until she was six months old and has had many physical complications.
This includes a neuronal migration disorder and a brain condition called periventricular leukomalacia, which has caused her to be partially sighted.
Summer has AMC which affects her joints, bones and muscles
Along with this diagnosis, it also came to light that she had arthrogryposis multiplex congenita (AMC), which affects her joints, bones and muscles.
As well as all this, 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 and has two feeding tubes, one from her stomach and one from her bowel.
Blocks of therapy unrealistic to afford for Carr family
One of the important activities which is a massive benefit to Summer’s physical health is therapy from CK Intensives, a type of specialist neuromuscular strength and conditioning.
The charity continued: “However, the cost of not only the therapy, but also of accommodation is unaffordable to the family, so regular blocks of therapy would be unrealistic to afford and the fundraising hopes to be able to provide for this.
“There is also a number of different types of equipment that would benefit both Summer and Zak, including an i-Joy Ride (electric horse-riding machine) and a TheraPlate (therapy bench).”
So far, the fundraising page has received £1,372.
Conversation