Case No. LS20P01640

31.Zoe is described passionately and effusively by her mother as “a blessing to everyone that is lucky enough to meet her”, “simply amazing… the light of my life and my family’s life…”; she is a child who is described as illuminating any room. The photographs of Zoe which have been included in the bundle of documents for this hearing delightfully give some small indication of all of that.32.Zoe suffers from a rare, sporadic, neurodevelopmental genetic disorder known as Williams Syndrome; it was diagnosed when Zoe was about 5 months old. I have learned a great deal about the condition from a useful publication issued by the Williams Syndrome Foundation (2021) entitled “Williams Syndrome: Guidelines for Educators” (Tynan, Kye, Van Herwegen). Specifically, I have been provided with specific reports on how the condition affects Zoe directly (see §35-37 below).33.Williams Syndrome is caused by missing genetic material on chromosome number seven; one of the missing genes in this area is the one which produces the protein elastin, which is responsible for providing the elasticity in body parts such as the muscles, blood vessels, skin, brain, and other internal organs. Children who suffer from Williams Syndrome may have a range of medical issues which can impact on their development and wellbeing: renal and cardiac problems, raised blood pressure, high calcium levels, joint and muscle problems (including hernias) and/or dental abnormalities. Features may include a distinctive facial appearance. Most children have mild to moderate learning difficulties with general IQ scores between 40-60 (Martens et al., 2008), although there is significant variation in the results of IQ subtests. People with Williams Syndrome are said to have sociable personalities, characteristic behavioural traits and variable degrees of learning disability.34.The Williams Syndrome publication (referred to in §32 above) contains the following notable extracts which are relevant to the issues before me:i)“All children with Williams Syndrome require some daily 1:1 learning in a quiet area or separate room. Younger children with Williams Syndrome in primary mainstream school require full-time 1:1 support including during play and mealtimes due to health and safety risks (wandering off, tripping over, unaware of dangers, choking, unable to open packaging and unable to cope with toilet needs independently). However, the child should always work under the instruction of the teacher.”ii)“Individuals with Williams Syndrome have low muscle tone due to the deletion of the gene ELN. As such, they benefit from physiotherapy to help with muscle strength, balance and coordination”;iii)“As children with Williams Syndrome have complex needs (educational needs as well as social and health ones) input from an educational psychologist is required, especially to get an Education Health and Care Plan (ECHP) in place”;iv)“Speak to an OT for the best intervention or approach that can help the child’s participation in school and classroom activities relating to gross/fine motor skills and sensory needs”;v)“Many children with Williams Syndrome show high levels of anxiety and often there is an increase in anxiety and decrease in wellbeing from puberty onwards. Although most young children with Williams Syndrome are happy, high levels of anxiety over time can lead to depression. There is some evidence that cognitive behavioural therapy can benefit young adults with Williams Syndrome. As such, input from a clinical psychologist/CAMHS or mental wellbeing team might be required.”35.As a result of this condition, Zoe has a complex congenital heart defect - pulmonary atresia, coarctation of the aorta, distal arch hypoplasia, and atrial septal defect secundum (this is the most common type). Additionally, Zoe displays global developmental delay with speech, language and communication difficulties; she experiences some sleep difficulties, and engages in self-stimulating sensory behaviours. Zoe has had feeding difficulties all of her life; she will not readily feed from her mother and in order to eat appropriately and sufficiently, Zoe is fed by the family nanny. The medical evidence suggests that behavioural feeding problems often are very slow to resolve and will require daily input and support. The mother told me that were it not for the patience and persistence of the nanny, Zoe would be “on a feeding tube”.36.Zoe underwent significant cardiac surgery on 9th of November 2021 at Great Ormond Street Hospital. Follow-up reports indicate that this was successful.37.Various medical reports have been prepared on Zoe by her treating clinicians and these have been filed with the court. Most notable is the collection of letters/reports from her treating Consultant in Paediatric Neurodisability, Dr R. From these letters/reports I have collected the following information: i)Zoe displays “delay in all areas of her development”;ii)Zoe’s diagnosis means that she will have long-term significant needs and will require additional support throughout her education;iii)Zoe’s developmental delay manifests itself in her communications: she communicates with a variety of gestures, vocalisations, and the occasional word. She appears to be understanding at a single word level and this is why she is struggling to follow more complex instructions; her speech development is significantly below what would be expected for her chronological age,iv)Zoe requires ongoing speech and language therapy support with her communication skills;v)Zoe is unstable on her feet, often falling over; she needs adult support in busier environments. She shows delay in her gross motor skills (in sitting, standing & walking), as well as with significant difficulties with balance (dynamic & static balance) and postural stability (gravitational and postural insecurity); Zoe has reduced muscular strength and physical endurance during activities, as she easily gets fatigued for her age.vi)Zoe is “highly sensitive” to noise and crowds (mother’s oral evidence) and shows acute sensory awareness towards certain sounds; in assessment she became visibly distressed, for example when her mother coughed. Her mother reports that Zoe is frequently upset when the vacuum cleaner or hoover is operating;vii)Zoe is often unwell with colds and the like, “more often than her friends”. The mother reported that Zoe is susceptible to infection and “always has a bit of a cough”;viii)Zoe reportedly struggles with transitions and change of events, particularly when others leave;ix)Feeding remains a significant area of difficulty for Zoe, she is still exceptionally fussy regarding textures of food as well as who can feed her. Zoe requires supervision during mealtimes to ensure she does not choke / aspirate. Zoe’s current developmental feeding age can be described to be around 4-6 months of age.38.Zoe currently receives, and I am satisfied benefits from, a range of therapies:i)She requires 1:1 physiotherapy once per week; she will require lifelong monitoring and treatment from physiotherapists due to the known musculoskeletal disorders associated with Williams Syndrome namely spine kyphoscoliosis, joint laxity in childhood followed by joint stiffness with age, tightness in ankles and toe walking, and ataxic gait;ii)She receives speech & language therapy, primarily to assist her with her problems with eating;iii)She receives occupational therapy to support her independence in her daily occupations such as self-care skills, engagement in education tasks and play skills. In addition to this, OT offers education and strategies for Zoe’s carers in order to continue to support her in her home environment as she grows and her needs continue to develop. Zoe had a tongue tie snipped when she was a few weeks old to facilitate breast feeding; it has been recommended that Zoe should have a further operation to release her tongue tie. It is expected that this will be available to her on the NHS.