Hi Everyone, I’m Verity. I’m 5 years old and I have CDKL5 Deficiency Disorder and this is my Journey so far...
CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control, seizures, and severe neuro-developmental impairment. This has left me with very complex needs and needing 24hr care. (My Mommy left work in September to care for me full time) I have severe epilepsy; resulting in daily seizures, Registered Severely Sight Impaired with CVI. I have Global Developmental Delay, currently I cannot hold my head up against gravity and have limited control of my arms and legs. I’m also presenting as being non verbal and Gastrostomy due to my unsafe swallow.
Due to my complex medical needs I have a number of healthcare professionals who deliver care to me including a Neurologist, Epilepsy Nurse, Dietician, Physiotherapist, Occupational Therapist, Speech & Language Therapist, Visual Impairment Teacher, Community Nurse, Specialist Early Years Teacher and Ophthalmologist. I have regular check ups, at home, at hospital and Virtual Visits.
I’m lucky to attend Virtual Storytime with the Charities SENSE & RSBC.
Thank you so much for your support towards sensory equipment… this is safeguarded and will ensure I get the funnest room possible… However; now I need some help in ensuring my home meets my needs…. With news that our my home adaptations will finally be starting in April 2024; your funds will fill the gaps that are not met by the Disability Facility Grant to ensure my home is fully adapted to meet my needs…. keeping me safe and happy and more importantly get fully involved with family life!
All funds raised will go directly into my bank account and used to purchase Specialist Equipment to ensure my home is fully adapted me!
Please like my Facebook page: @VerityCDKL5 where I will be documenting my journey and how I use the funds raised and any future fundraising!
To find out more about CDKL5 Deficiency Disorder visit https://curecdkl5.org.uk/
Thank you so much for your support!!!
Keep Smiling!!!
Verity XXX