Just4Children are fundraising for the lifetime medical needs of Soren. He needs therapies and specialist equipment that enable him to make progresss and develop with movement, communication and speech, swallowing and health needs.
Soren is a little boy from Aberdeenshire with an extremely rare genetic disorder (KLF7 associated disorder). He is 1 of only 5 known documented cases in the world.
Soren had a challenging start to life but his diagnosis has provided an understanding of the reasons behind his complex and often difficult journey so far, as well as a greater appreciation for his uniqueness. Despite the many difficulties, he has remained a joyful, loving, soulful child who brings immense happiness to his family and everyone who is part of his life. We want to give him the opportunity to enjoy every day with a smile and optimise his life experiences.
Owing to his complex needs Just4Children are fundraising to enable Soren to access specialist life changing therapies and equipment. We hope that with your support we can help Soren to make the best progress possible in his health, development and quality of life.
Our fundraising aims are to enable us to provide Soren with:
Specialist therapies that work to help him make improvements with his development, movement and strength. These include sensory and movement-based therapies such as specialist physiotherapy, ABM Neuromovement, Feldenkrais, Hydrotherapy, Hippotherapy (therapy that involves horse riding) and music-based therapies.
Specialist equipment needs to ensure that Soren is comfortable, able to communicate to the best of his ability and has the correct support in order to participate in activities.
When Soren was born in February 2016, he experienced chronic breathing difficulties and low tone at birth. He was quickly transferred and cared for in the local neonatal unit where he remained for several weeks. Whilst in neonatal, Soren was found to have difficulties coordinating his swallowing and breathing whilst feeding. He was (and still is) considered to have an unsafe swallow. He also began experiencing dramatic and sudden drops in oxygen saturations and developed a pattern of noisy high-pitched breathing known as ‘stridor’ which was linked to a weakness in his airway known as laryngomalacia. An ultrasound then discovered a significant malformation in the structure of the brain that connects and communicates between the two hemispheres (Corpus Callosum). When later transferred to the Royal Aberdeen Children’s Hospital for ongoing assessment, they found that Soren had an enlarged liver and spleen as well as low tone and weakness in his muscles. He also began to have intermittent episodes of high tone in his muscles known as dystonia.
Family life started to take a very different and dramatic path as Soren settled in at home. His airway issue resulted in him having multiple daily episodes where he would struggle to breathe often resulting in requiring emergency help. These were distressing life-threating events that affected daily life in many ways. In his early years, Soren repeatedly experienced chest infections and illness. He would regularly require an ambulance and often spend many weeks in hospital for oxygen and breathing support and infection management. Unplanned and prolonged hospital stays became a part of family routine with his dad and brothers spending many of their after-school hours and weekends visiting Soren and mum in hospital. His health was extremely unpredictable and his prognosis uncertain.
Soren was also referred to an early development team and his journey with therapies such as physio, speech and language therapy, dieticians, occupational therapy and various paediatric specialists became part of life. Soren was also assessed by ophthalmology and was diagnosed with a severe visual impairment knows as Cortical Visual Impairment (CVI), which is linked to how the brain processes and makes sense of visual information. His development was, however, hampered significantly by regular illnesses.
At around 10 months of age, Soren began to have seizures and was diagnosed with a type of epilepsy known as Infantile Spasm (West Syndrome). These seizures can be very damaging to the brain and development and Soren consequently experienced a loss of skills and movement. As the epilepsy evolved, Soren also started to experience seizures that would stop him breathing. This was a terrifying time, with several life-saving emergencies and regular interventions from the hospital crash team.
Several months after the Infantile Spasm diagnosis, Soren’s respiratory health declined yet further ultimately resulting in a significant infection and a collapsed lung. He was emergency ventilated and transferred by air ambulance to the Royal Edinburgh Children’s Hospital. Soren was placed on a ventilator and received a high level of input from the intensive care staff as they attempted to treat high levels of infection in his body and keep him alive. Too weak and sick to operate it seemed there was little could be done for him but eventually high-risk lifesaving surgery was carried out to remove an area of his bowel that had died off from infection. Against the odds, he survived surgery but now requires the use of a stoma bag.
Soren has reached a point where his seizures are under control with medication. This now gives us an opportunity to work on helping him to learn and optimise his development. Soren lost a lot of his skills and some movement during the most acute phase of seizures, illness and ventilation so he consequently been delayed in a lot of his learning and development.
Soren has been able to make progress towards tolerating food in his stomach using gastronomy feeding and a blended diet of real food through a tube gastrostomy tube (with the guidance of the hospital and dieticians). It is important to keep his weight healthy and also to give him nutrients that can benefit him. He continues to have an unsafe swallow at this time but the family hope to make progress with this by accessing specialist treatment.
Soren continues to have episodes of acute airway dystonia that can be very challenging to manage on a daily basis. The risk of this happening has prevented him from being able to safely attend nursery or school without him mother in close proximity to intervene and it is critical he has 24-hour supervision. It also significantly restricts his ability to travel and participate in activities and also restricts family life. He is more vulnerable to this happening when he is unwell because his muscles become weaker. Despite this, his overall respiratory health has improved and he has had less chest infections and hospital stays.
Soren continues to find movement and coordination a challenge. He has learnt to roll over and can push himself up on two arms but he is desperately trying learn how to come into sitting. Soren loves to have freedom of movement and shows great determination. Soren also has a curvature of his spine known as Kyphoscoliosis. Ongoing therapy and specialist equipment is central to helping him continue to grow and adapt in the best way that he can.
Soren continues to experience difficulties with learning and communication and work with his vision and specialist speech and language therapy are central to him making progress in this area. We also hope he can benefit from the use of new and rapidly advancing technology and learning aids.
Soren has very acute hearing and is sensitive to sensory stimulation such as noise and light. He can become extremely distressed and unsettled, especially when he goes from one location to another, and this can result in difficulties with coordinating his breathing. Listening to music has been essential in helping him to be reassured and cope with new experiences and environments.
Soren has shown us that he has great determination, a gentle nature, a sense of humour and a love of life. He has been our greatest teacher. It is miraculous he survived his traumatic early years but we look forward to learning with him and helping him to make more progress on his journey.
Thank you for your support.
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