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Tapi\'s big build

Tapiwanashe (a Shona name which means "given to us by God") is an adorable child who is ever happy and content. We call him "Tapi" for short. Tapi is our sunshine, our world and we will be lost and incomplete without him. As parents, he is the reason we wake up each day and face our challenges just to give him a better future in his already challenged world. He gives us the strength and tenacity to carry on. Tapi is a very much-loved member of our family. Born in a family of only 2 boys, he developed such a special firm attachment with his brother. He had Infantile spasms around the age of 7 months. Unfortunately, he received the initial steroidal treatment very late as it was said nothing was wrong with him. There were no issues identified during pregnancy or birth. There has never been a formal diagnosis for Tapi or a known cause for his clinical presentation however, he has a few known things ongoing as listed below:
• Generalised hyperkinetic movement disorder with dyskinesia, ballismus, choreoathetoid and dystonic posturing
• Microcephaly
• Severe Global Developmental Delay
• Epilepsy
• Central Nervous System malformation – Partial sighted
• Enrolled on to the 100,000 Genomes project (no cause yet found but still on the study to try and find answers to his presentation)
• History of Infantile Spasms
• Disturbingly, a recent MRI has shown that Tapi's brain has supratentorial and infratentorial cortical atrophy which has progressed from the previous scan and this has been consistent with some of his developmental regression.

Now at 9 years of age but with the above ongoing Neuro/Genetic/health issues, Tapi cannot sit, stand, walk or talk, he has difficulties with eating and drinking and cannot feed himself. Tapi has not been able to meet his developmental milestones which has had an impact on his activities of daily living therefore requires 24 hour care. Tapi is known to neurology & genetics and Great Ormond Street Hospital has had some involvement with Tapi's care.

Tapi relies on a few medications to manage symptoms of all his conditions and again requires adult assistance to administer. Due to Tapi's immobility, he is prone to muscle wasting, chest infections and constipation hence requires routines of Physiotherapy management plan with the aid of a standing frame and use of hydrotherapy and rebound therapies. He requires specialist equipment to sit. He is unable to meet any of his nutrition and hydration needs, moving and handling needs independently. He is at high risk of choking and aspirating because of his difficulties with chewing and swallowing and has SALT involved in his care. Tapi is unable to communicate verbally and instead we use behavioral cues to communicate. He is unable to meet his own personal care needs, we use specialist bathing equipment supplied by Occupational therapists (OT) to bath and dress him. Tapi has social integration difficulties and due to his sight impairment, he has difficulties with his central and peripheral vision and his ability to process information from what he sees is affected. Tapi’s conditions impacts on his physical, self-help, speech, communication and cognitive skills.

Tapi is a happy child with a gorgeous ‘heart melting’ smile. He has love for people but not so much in toys. He enjoys sensory stimulation and has mastered the skill of rolling and propping himself up with his elbows and keep his head up for short periods of time. He explores his environment through rolling movements on the floor but always requires adult supervision to create a safe boundary for his exploration as he has no awareness of danger and can easily harm himself. The skill of rolling has over the recent years unfortunately seemed to regress. He loves outdoor space and over the years has enjoyed several family holidays abroad. He responds very well to familiar people and can show he is happy to see them. He still appears comfortable with new people and is open to new experiences and activities.