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 diognosis which where tuberous sclerosis complex and her 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 constant tests bloods, video flaroscapies, ct scans heart scans ecsta. She would have upto 90 seizures a day till 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 a few times we have thought that this was it when she's not responded to meds but she's kicked back fighting. In October 2016 Darcy became very unwell with colds ores virus and also ebv (galanduler fever) at 4 years of age. She was in and out of hospital as an inpatient for months she became severely nutropenic and had to be basically isolated from the world. She dident let it dampen her spirit she still smiled like a trooper through it all today she is still fighting off this virus which usually lay dormant in you dna in Darcy it hasn't this makes her tier easy so she spends a lot of time watching films on the sofa with me she is also being monitored closely to make shour no complications of caebv occur so more bloods.
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 brakes one that happened a hour into a holaday another from being on a bouncy castle with friends ( aparntly a rare fracture that usually takes a grate amount of force to do and she did it with one bounce) she was refure to the metabolic bone desiese doctors who ran test and at 5 years old was diognosis with ostoparosis which is rare in someone so young so far she has broken both her arms one of them twise, the ball at the top of the long bone that gose into the shoulder , her right leg twise and her heal in her left foot, she also fractured her cheek. So spends a lot of time layed on the sofa we do not know how this will progress with her being so young to have it but it limits her from takeing part in things like trampolining bouncy castles ecsta in the future she may need treatment so far they are holding off and monitoring it due to her other conditions it would mean changing her epilepsy meds to do this which then would have an impact on seizure controle
She most resent had a broncoscapy and pH readings done which we are currently waighting for the results from which may mean a op to sort the reflux out and more treatment depending on results of her broncoscapy.
Darcy loves life but gose through so much and still smiles and makes people laugh