An Update on Annabelle’s Health – Batten Disease Awareness Day

Annabelle is finding life more challenging as her mental health is deteriorating. She has episodes of extreme tiredness and they are becoming more frequent. We can see a pattern of events that lead up to one. Annabelle has high levels of anxiety caused by stresses of daily life. They can push the anxiety up to a point where her body can not cope so she goes into a sleepy episode. During these episodes Annabelle will sleep a lot, her dementia symptom’s are apparent and she does not know which day it is, whether she has eaten or not, and will have no memory of events. She will have periods of uncontrollable crying brought on by fear and she will also have hallucination – these can be very scary for her and for us. These episodes can last from a couple of days to a couple of weeks and after each one she returns back to her normal self but we are very much aware that one day these episodes will be here to stay and she will not return to herself.

Her mobility is getting slower and her aches and pains are increasingly forcing her to use the wheel chair around school and visiting shops. She loves her swimming and she can swim independently, giving her the freedom she craves for.

Annabelle has remained seizure free since her first and only one back in 2019, and remains on the medication.

Annabelle remains in main stream school and has plans to sit her GCSE’s next summer but there will be options for her to get recognised for her education if she cant sit them. We reduced her curriculum last year so she will not sit as many subjects as her peers. We are considering her sixth form options and this will most likely be in a special needs school setting for the flexibility of education and accessibility around the buildings as well as access to after school clubs. 

Annabelle will not let these new challenges get in her way. She loves beading and making jewellery and she has now set up a Facebook page to sell her makes. With the support of the Amber Trust she is having weekly singing lessons which is perfect for her love of music. Annabelle is still passionate about girl guiding and she is now a Ranger, loving the badge work and socialising with the other members. We cannot forget her love for The Vamps of whom we will be seeing in September at Bournemouth, fingers crossed COVID will allow.

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