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Diagnosis as a babyOur Stories

Alicia Jade

By December 22, 2021June 22nd, 2022No Comments
Alicia Jade

March 1999

Hi, I am Alicia Parks, I am very happy. Despite all my problems, I am very socially aware, alert young lady, and very mischievous. My mum and dad are Mandy & Neil. (I cannot write but I think this is what I would want to say)

My mum and dad waited 14 years for me and say I am a “precious gift” that has given them a road no parent would ever choose to travel. The days that followed my birth taught them so much, and now never taking anything for granted. This journey they travel with me has knocked them off their feet but, in the turmoil, are understanding, kind and giving, most importantly are experts in the interpretation of me, who cannot speak.

I was born March 28th 1999, weighed five pounds five ounces; no baby bonnet fitted me because my head was so small. We were allowed home after a couple of days with no mention I may be disabled.

As we understood it back then I was born asymptomatic (no signs at birth). Sadly my six week check confirmed I may be blind. Blood and urine tests confirmed later I had contracted Cytomegalovirus (CMV), which unfortunately left me with severe brain damage and with serious disabilities, thus causing a lifetime of 24 hour care. Being Spastic Quadriplegic and blind with severe global development delay, this had taken my chance to be a healthy baby and young lady away.

I am unable to sit up, walk or talk, in fact do anything for myself. I am now 15 years of age. My visual skills have developed considerably thanks to my sensory room and input from mum, dad, brother and sister, but looking remains hard work and requires a lot of effort and concentration. In order to try to increase my mobility, a great deal of time is also spent providing physiotherapy, massage and warm baths. My muscle tone creates stiffness and it has been this that has put me through major surgery, most recently spinal surgery, placing a rod in my back to enable me to sit upright.
I am totally dependant at all times of the day and night for dressing, feeding and toileting. Whilst I also use lot of specialist equipment; a wheel chair, feeding chair, orthotic footwear, arm splints, hoists and specialist bathing equipment, it takes two people to lift me for every move. I have a happy time although it is full of stress for my family in providing care and ensuring my respiratory machine delivers moist water through my nose so I can cough easily in the morning and prevent my hypoxic fits which scare my mum.

Whilst mum and dad carry out their care role they are dedicated to giving me and my brother a happy life. They both work so hard in really cool jobs and take me on lovely breaks. They are extremely resilient in the realms of the challenges my disability has dealt them and I know they have found a rewarding road and appreciation for things they never knew existed. I want to say it does not need to be this way, my mum should have known about cytomegalovirus, after all we all catch it at sometime. She knew about toxoplasmosis and washed her hands, she knew about Downs syndrome and had the blood tests, she knew about spina bifida and took folic acid, why did she not know about CMV??