Darcy was born in 2012, she came out with a swelling to her wrist and a funny shaped pupil, she was also stiffening and staring a lot. It took me 5 months to get her original diagnosis which was tuberous sclerosis complex, colomboma and also infertile spasms.
Over the last 5 years she has spent many periods of time as an inpatient in hospitals, constant rounds of outpatient appointments with blood tests, video-fluoroscopies, ct scans heart scans etc. She would have up to 90 seizures a day until she turned 4 and now has around 0-10 due to a good med combo. She has been in resus a few times also due to prolonged seizures. In October 2016 Darcy became very unwell with cold sores virus and also glandular fever at 4 years of age. She was in and out of hospital as an inpatient for months, she became severely neutropenic and had to be basically isolated from the world. She didn't let it dampen her spirit and still smiled like a trooper through it all. Today she is still fighting off this virus which usually lays dormant in you DNA, in Darcy it hasn't so she tires easily and spends a lot of time watching films on the sofa with me. She is also being monitored closely to make sure no complications of caebv occur.
For the past two years Darcy has broken bone after bone, so much so she spent a good 6 months of 2017 in cast due to a string of breaks. One happened an hour into a holiday, another on a bouncy castle with friends - a rare fracture which she managed in one bounce but usually takes a lot of force. She was referred to the metabolic bone disease team and at 5 years old was diagnosed with osteoporosis which is rare in someone so young. She spends a lot of time on the sofa, we do not know how this will progress with her being so young but it limits her from taking part in things like trampolining, bouncy castles etc. In the future she may need treatment, so far they are holding off and monitoring it due to her other conditions as it would mean changing her epilepsy meds which would have an impact on seizure control.
She most recently had a bronchoscopy and ph readings, we are waiting for the results which may mean an op to sort the reflux and more treatment depending on the results of her bronchoscopy.
Darcy loves life but goes through so much and still smiles and makes people laugh.