About Down's Syndrome : Denise

Written by Denise’s mum Jackie

We were living in very bad housing in Tooting, South West London when I gave birth to my daughter Denise on 2 March 1970. She was not diagnosed with Down’s syndrome until she was six weeks old. I had to take her to see the GP because I had found it difficult to feed her because of her large tongue, and she was repeatedly being sick, only to find that the doctor said she had a degree of ‘mongolism’ and would not survive! The shock of this made me investigate what this all meant to us as a family, with one child already (from a previous relationship) before marriage.

There was not a lot of information available, except from an American study. I was able to follow their advice as to how to help my daughter to begin to move her muscles and body and take notice of my forever ending stimulation to help her react like her sister. I was forever aware of any article in papers or at the local library of how I could help her.

Then, at two years old, I met a lady from the newly started Down’s Babies Association, who was able to point me in the right direction to at least get some money to help us to provide a better existence. We received some help via social services, with money which was backdated to the last 18 months called the ‘Attendance Allowance’, as Denise needed considerably more care and attendance than other children. After this, I did become pregnant again and gave birth to a third girl. I did my best to bring up my now three children, who accepted their sister and loved her. The money really did help with care, as I had to work due to a low income. I worked in between the hours that I was needed to be with my children, and my husband had to take a major part in the care of us all.

Despite having a full-time job in London, when Denise was three, I proudly presented her at the hospital, walking and talking, where we had previously been told she would never walk or talk. Even as a one-year-old, Denise was denied the MMR vaccination as they said she would die of measles if she caught it, and that would be a blessing!

Later, we fought for Denise to have cataracts removed, as she was discriminated against due to a nurse who thought I was just her carer at an appointment one day. She was eventually given private care at Great Ormond Street Hospital as a result of us complaining about discrimination.

But Denise has survived, despite being diagnosed as a Type 1 diabetic at the age of seven. She learnt to give herself blood tests and her own injections for years, proving that she could live independently in a flat!

Unfortunately, Denise broke her hip a year ago, and caught the dreaded hospital infection VRE during her operation. She was in hospital for months and months and two operations later, is still unable to walk and in terrible pain.

Denise is a wonderful disco dancer, with Michael Jackson being her favourite. She also has a terrific sense of humour. She survived her mum and dad splitting up thanks to her continued care and attention, and she is still fighting for her life in a terrific care home in Gravesend.

And all of this would not have been possible, but for the help of the Down’s Syndrome Association in the first instance. I want TO THANK YOU!

NB: Since writing this, Denise has sadly died. Her family wished us to post these words as a celebration of her life.

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